5 ways that voting contests annoy people :)



I've been trying to write this post for two weeks!  I hate asking for votes, but someone kindly nominated something I wrote in the Best Post category in this year's Irish Blog Awards, and I want to thank them publicly here.  It was unexpected and totally lovely :D

This is the post that was nominated:

What If

And I also need to say a big thank you to those friends who have already voted for this post and spread the word.  I am also in competition with some of my friends in this category, including my pal Jazzygal and members of the Irish Parenting Bloggers Group.  And these three wonderful posts have a good chance of being in the top ten, from which the winner will be chosen by a panel of judges....so you might want to support them too, or instead, or something like that...

Jazzygal - Full Circle

Carmel Harrington - Naomi's Story

The Clothesline - 11 Things the Parenting Books do not tell you about Labour and Birth

To vote just click next to the post of your choice, then click on the vote now button at the bottom of the page.

http://www.blogawardsireland.com/category/best-blog-post-2/

And, if you really want to, you can vote every week!

So now I have become one of those begging bloggers.  I hope you will forgive me...



I have a dream

And I thought I couldn't do dreams any more.

I thought I had to accept my life the way it is now.  Just get on with it.  But that left me feeling so low.

But perhaps I was wrong.

More than anything I need a break.  Staycations help, but I'm still at home looking at all the things that need doing.  I need to get away, but how?  Going on holiday just seems unrealistic right now.

Travelling by ferry is not possible at the moment, and I cannot risk Smiley's wheelchair getting damaged by careless handling at the airport.  I'm also always so stressed about going anywhere new with my daughter in case it is not suitable.  Wheelchair-friendly often mean ramps and support bars, not the high-tech equipment that my daughter needs.

So no holidays.

But my son will grow up and become independent in a few years.  So it will be just myself and Smiley. What will we do?  How will we pass the time?  Once it's just the two of us, there must be a way of making up for all those years of missed holidays, and friends and family have shown that independent travel is possible.

Some way of travelling that means that I can bring everything with me that Smiley needs.  If I want that, someone else must have thought of it already.

And they have!

I found a company in the UK that converts caravans - like this one - to provide everything that we need, from a wet room for her shower, to ceiling hoists to lift her from bed to wheelchair and back again - I don't even have that at home!

With thanks to the Swift Group

I think she would love it.  There's so much that we could do, so many places we could go.  I got a taste this weekend when we attended a concert in Dublin for special children.



She absolutely loved it!  And head-danced non-stop through the entire thing.  I joined her of course :)



Perhaps one day I will make it to Electric Picnic or Bestival after all....


Reasons to be Cheerful 23.8.13

Reasons to be Cheerful at Mummy from the Heart

Yesterday was the perfect storm, but even storms pass eventually, and when all my kids were tucked up in bed last night and peacefully asleep, I realised that we'd survived and all was well, or perhaps that was the glass of wine I needed to wind down?

So what happened?

I had a very busy morning, working flat out and feeling guilty about using the electronic babysitter for the kids. So naturally I promised that I would bring them out in the afternoon.

But first there was a delivery due at two: a new sleep system for Smiley, to improve her sleep, make her more comfortable and help prevent further physical deterioration. We waited, and we waited. And no-one arrived.

I was also waiting for a phone call from my son's secondary school.   I missed the call, and it was too late to ring them back. There are still so many unresolved issues, including whether or not there will be a bus to collect him on Monday.  This is not essential as we live close by: I just needed to know either way.  So now we will walk or cycle to the school, and if the bus arrives without notice?  Well that's their problem.

Then we played hunt the sunglasses.  They were located two miles away, but it was not possible to reunite sunglasses and owner.  Thankfully he agreed to wear an old pair of mine.

The trip out looked set to be a great success until I decided to pop into a local shop to pick up some provisions. There was a little step at the door. Getting the wheelchair in was fine. But it felt awkward trying to get it out. As the back wheel landed on the pavement, I felt something shift and suddenly there was a shower of bolts and washers flew out in all directions as the top part of the wheelchair came loose from its chassis.

There was an explosion of panic in my brain.  Clearly something was badly wrong.   I stood very still holding the two parts of the chair together, stuck in the doorway, and afraid that Smiley and chair would come crashing to the ground at any moment. We looked very strange indeed and obviously some passersby were staring, but many more offered help.  I rang my daughter who luckily was at home, and even more luckily I still have Smiley's old buggy (even though the Irish Health Service no longer support it or pay for repairs).  Within half an hour she arrived with it and by rearranging half the shop I was able to transfer Smiley from chair to buggy and get her home. Not without a few tears once I was away from the main road though.

But the day didn't even end there!   My nearly new laptop crashed at 8pm. And I've never backed anything up as in 20 years of owning Macs this has never happened before.  But thanks to the interwebs I was able to get it working again and backed everything up, just in case....

So my reasons to be cheerful this week are: mobile phones, spare sunglasses, google, the Irish company who made the wheelchair and rang me at 8.20 am this morning to arrange to fix it, and my wonderful children who helped or patiently waited or laughed through everything!



These are my children

(Written for the Mumsnet #thisismychild campaign, a wonderful campaign to raise awareness about the issues facing parents whose children have special needs, and myths about disability.  And apologies to regular readers who will know all this already) 

Because I have two children with additional needs.

Picture my family out for a walk.  What do you see?  A girl in a very large buggy, a tall pre-teen walking close by his Mum and telling her all about his latest video game, a lovely young woman, at a slight remove, headphones firmly clamped over her ears, and me, a middle aged Mum with a look of perpetual worry stamped on my face.

Perhaps you look a little more closely.  You realise that the girl is actually a giggly teenager with a big bobbing head, tiny hands and feet, and the frill of a nappy peeking out over her leggings.  Eeuugh, you think, she must be incontinent.  Then she starts making a noise, you don't know what it is, but it's very loud.  You feel a bit sorry for the Mum.  She might start sticking out her tongue to indicate that she is thirsty, it looks odd and unattractive and you pull your children away.  Maybe the 'r' word creeps into your mind.

Look again.  She's making noise and kicking her legs and bobbing her head because she's happy.  It doesn't take much to make her happy: food when she's hungry, drink when she's thirsty, a bed when she's tired, the toilet when she needs it (she is partially toilet trained), and love, security and entertainment, well, all the time.  The simplest things make her happy, and she broadcasts her happiness to anyone who makes the effort to get to know her.

But she can't walk or talk, you're thinking, that's pretty bad isn't it?  Well you'd only be half right.  She may not have understandable speech, but she certainly knows how to communicate!  And she can walk too, with a little help from her friends...



Here on the blog she's called Smiley, because she is.  And Smiley is described as having severe physical and intellectual disabilities.  I used to say that she has cerebral palsy as that is the description used on all the forms that have to be completed regularly to get her the services, funding and equipment that she needs.  But it was confirmed earlier this year that she is actually undiagnosed.  And very, very special.

And the other child with additional needs?  Well that would be my son.  You can't tell just by looking at him, because he has aspergers syndrome.

More about that here: aspergers syndrome

He is also just about to start secondary school so I can no longer write about him.  I just have to keep my fingers and toes firmly crossed at all times...


Reasons to be cheerful 15.8.13

At last I don't need to hunt for reasons to be cheerful, so read on to find out why!

Lunch


Feeling like a naughty school girl who was bunking off school, I booked a babysitter for last Saturday afternoon and escaped across the city for a a long lazy lunch in the sunshine.  I was meeting another autie Mum who I rarely see, and it was great to catch up.  Funny how we spent most of the time talking about autism and aspergers though!

Building Billy


My son has been begging for a bookcase for months.  Perhaps it should be called a 'games case' as I don't think he ever planned to put books on it.  I didn't understand the need, as he had storage for all of them already, and there was very little room in his Den for any more furniture.

But, thanks to the RDI therapy programme, I needed to organise more activities that we could do together.  So off we went to IKEA.  And it was busy and stressful, and we both needed time out at one point!  Luckily a cake break in the cafe topped up our motivation levels and we came home with a Billy bookcase, a chest of drawers and a chair - and managed to fit all the boxes around Smiley in her wheelchair too.

Operation Building Billy did not quite go to plan as an RDI Activity, but we did it together, and he  happily spent the next hour organising all his games in alphabetical order on different shelves...

And then there were four


My son was hyper anyway, Smiley went to bed as usual, but in her clothes, and I fuelled up with sugar and caffeine.  And at 11pm we headed for Dublin airport.  Eleven weeks ago, Angel headed for the USA on a J1 working Visa.  Last night she came home.

Wobbly camera due to excitement!

Best feeling ever :D


Reasons to be Cheerful at Mummy from the Heart

Countdown to secondary school

In two weeks time my son starts secondary school.  I've spent half the summer so far working on his RDI programme and trying to organise daily activities, and the rest of the time burying my head in the sand and hoping it would all go away.

He's actually pretty positive about it, but there could be lots of potholes ahead.  I'm just focusing on first impressions for now, as I think they're pretty important.  His primary school has a great transition programme which introduced him to the secondary school, so he's seen it, experienced a couple of lessons and spent time in the Asperger's Unit, which at secondary level is somewhere the boys go if they are not coping in class, for whatever reason.  So his first impression should be okay.  It needs to be, as I think it will set the tone for the whole year.

Then there's the first impressions that everyone in the school will have of him.  Basically I'm hoping that he won't stand out.   I want his teachers to know about him, but not to notice him.  For a few days at least!  I want his classmates to like him, and see him as one of them.  I still remember my first day at secondary school, and not in a good way.  School began on the Thursday, but for various reasons I did not start until the Monday.  I can still remember walking in, seeing the one empty desk, and 29 pairs of eyes turning around to look at me.   It was not the ideal start.



So I'm now in serious countdown mode, which means rereading all the reports, and gathering together all those lists I've been making over the past couple of years and putting them in one place.  I thought I might put some of them here: they might help someone else, and some of you might be able to point out something crucial that I've forgotten....

Here we go:

Uniform


My wallet is lighter, but the uniform has all been bought.  It was the first hurdle, as he has never worn a complete school uniform before, but the secondary school insists on it.  A meeting with the Unit Head persuaded him that it was necessary and after two fairly stressful visits to the suppliers, we have the school shirts, tie, trousers, a jumper, shoes and a coat.  All I have to do now is alter the trousers, cut out all the labels and wash everything in gallons of fabric conditioner!

School Rules


I plan to see if there is a copy available of the rules so I can go through them with my son -- I cannot find them on the website.

Learning Needs


His last IEP identified a number of social, emotional, sensory and motor difficulties that hold him back.  Many of these would not normally be tolerated in a secondary school classroom.  Some are being tackled - it has been suggested that he use a laptop for his work as his handwriting is still slow and can be difficult to decipher.   I am hoping that he may have grown out of some of the others - after all, he didn't have many of these habits when he was younger, and he has matured a lot in the past 12 months.  Perhaps a new school and a new start will be the makings of him.

Some articles suggest that I should put together a list of his "issues" to give to all the teachers - but plenty of reports have already been given to the school.  Do I really want to suggest that he is a "problem" child?  Maybe I should give him a chance to prove that he can fit in, that he can knuckle down and concentrate on his work, and be friendly and tolerant of the other children in the class?

The saddest thing I've seen in all the reports over and over is that he says that he doesn't want to be a "bold" child.  It must have been been said to him, perhaps over and over.  I've always tried to criticise the behaviour not him as a person, but I'm not sure that he always got the distinction.

IEP


This has not even been mentioned so far, but it seems they are still part of the secondary system, so something else to chase up...

Getting to school


A school bus will be available, but sometimes issues on the bus lead to difficulties for the rest of the day -- so I'm still hoping that we can walk/cycle in together.  That could be very good for both of us in lots of ways!  Though presumably I will have to disappear before we round the last corner....

Organisational Issues


These have never been identified as a huge issue for my son, but these are some of the suggestions that I like:


  • buying two sets of books, one for home and one for school
  • using colour coded stickers on the books and the timetable
  • get the timetable before school starts 
  • using a see-though pencil case


Lunches


I have seen no information yet at all on this fairly important issue!

Fidget "Toys"


These have still been needed during the summer - he currently favours my raffia mats, which means a lovely mess all over the floor of the living room every day!

We chatted about what he could use in secondary school.  He knows that pen clickers are not popular with teachers or pupils.  Any suggestions?

-------

So that's it.  I am going to keep all my fingers and toes crossed that the school will make accommodations for him, and that he will make an effort to adapt to school life.  I'm going to hang on to his positivity, access to his friends, and the security of knowing that he can retreat to the Unit, if he needs to - thanks Jen for the reminder x

And I guess that this really will be the last post about Asperger's.  I'd love to chronicle the long road ahead but how do I do that and protect his privacy?

Reasons to be Cheerful 8.8.13

This week was all about our mini-staycation: preparing for it, enjoying it, and then clearing up and recovering!

My brother and nephew arrived from Wales on Friday and left on the early boat on Tuesday.

There was great excitement and a bit of anxiety before they arrived. Some of it was mine.  But in fact it was like a weekend away, only spent at home.  I swear I didn't touch a saucepan for three days!  Smiley was so tired out from all the attention and trips out that she was fast asleep before 9 pm every night and with my son playing games with his cousin, I could sit in the living room with my brother and watch entire films without interruption.  Bliss!  We also managed a bit of modified RDI in the form of cooking lessons for my son from his uncle.  The best cook ever, apparently.

There was lots of fresh air, cycling, and cake, so everyone was happy.

And, as usual, my brother's DIY expertise was put to good use: the cooker hood lights are fixed, as is the rail in my son's wardrobe and, with four willing pairs of hands, it only took a couple of hours of chopping, weeding, clearing and mowing to turn the jungle out back into a little sunny haven again...



If you are ever feeling a bit down, I recommend joining in with this wonderful linky from Mummy from the Heart - it always makes me feel better.

Reasons to be Cheerful at Mummy from the Heart

Children locked up in Ireland in a school near you

Quiet rooms, seclusion rooms, isolation rooms, withdrawal rooms, small safe spaces.  Different names, but they mean the same thing.  There could be one in the primary school attended by your child, but you probably don't know about it.  Most parents don't, until the room is used for their child.  Until it is decided that their child needs to go into/be locked into this room because of their behaviour and, in theory, to give them a chance to calm down away from the stresses of the classroom.   Your child is unlikely to be affected unless they have autism, aspergers, ADHD or a similar special need.  It is not illegal (see below), but concerned parents have been unable to find clear guidelines for how they should be used.

And some of the stories that are emerging are the stuff of nightmares.

This is what happened to one 11 year old boy - the family are reluctant to go public because they want to protect their son.  But they know that if they don't, they may never get justice for him:

My child has ASD and ADHD. He had been attending a school 15 miles away as it has an ASD unit. He was mainstreamed but was attached to the unit. In September last when he went into 5th class, his resource hours had been stopped, no resource was given to him from the unit. He struggled to keep up, got frustrated, fell even more behind.
They had been using an isolation room to put him in if he refused to do his work (or couldn't because it was too hard/he got frustrated), or if he started to 'meltdown'.
It got to the stage that he was spending a lot of time in the isolation room. The staff called it the 'calm room' but sure they could have called it 'a chocolate factory' it doesn't mean that's what it was. 
The room is 6x4 with a lock on the door.
On January the 15th he spent probably an hour in it, on January the 16th he spent 5 hours.
On January 17th he spent 5 hours 10 minutes....locked inside, screaming to get out.
On January the 18th he had had enough....he smashed the window to run away...
He had no shoes or socks on..... He was left in the room, screaming hysterically, kicking the door, they blocked the window....the room was dark. When I got to the school to take him out I was told he was 'fine' and that they wanted to talk to me. It was half an hour before I saw my child. Only discovering then that they had in fact called the gardai on my 11 year old child...but failed to tell them that he had special needs and had been locked in an isolation room for 4 days.
I only discovered later on that they had left him in that state....for an EXTRA half an hour.....in that danger, no shoes or socks on.....room full of broken glass....To me that is abuse.
I complained to the department of education about his disgraceful treatment, I complained to every single relevant department....and some not relevant....NOBODY will take any notice.
I complained to the Board of management who didn't hold up my complaint....they said that staff acted impeccably that week (really???)
I complained to the catholic church.....The bishops office said they would 'pray' for us.
I haven't gone public (yet), I'm trying to protect my child, I'm thinking of his future (and how google is there for life...lol) But something needs to be done.
How can a school be run by a Board of Management and not be accountable to anyone else?
How can a child be left in such a dangerous situation...and NOBODY care.
How can this happen in Ireland?


This is the room where it DID happen:



If you would like to support this family, please like and share their Facebook page:

https://www.facebook.com/pages/Primary-school-in-co-kildare-locked-child-in-room/1399365540284551

What would you have done?  If I had've been that 11 year old child I'd say that I would've smashed the window on Day 1.  This was a child in distress.   Being locked up was the last thing they needed.  Yes,  teachers are under pressure in these situations, and perhaps they need more support and more training in helping children with so-called challenging behaviour.  But locking up children is going to make them more upset, more anxious and even traumatised.

This is not just happening in Ireland either, there have been recent reports from the UK, Australia and also the US, where according to this report, children were restrained in isolation rooms 39,000 times in 2009 - 2010.

http://live.huffingtonpost.com/r/segment/why-are-we-locking-up/504f88f82b8c2a5531000411

The Department of Education Guidelines for the building of 'small safe spaces' are on page 24 of this document:

http://www.education.ie/en/School-Design/Technical-Guidance-Documents/pbu_tgd_026.pdf

It says: "This space should be located directly off or adjacent to the classroom and is intended as a safe area that a pupil, under the supervision of a staff member, can access for a short period of time." 

Not five hours.  

Not locked in.

Not surrounded by broken glass.

This is WRONG.  

These are children.  There has to be a better way.


If this is an issue that matters to you, please sign this petition: http://www.change.org/en-GB/petitions/department-of-education-ireland-shut-down-and-remove-isolation-rooms

Reasons to be Cheerful 1.8.13

Reasons to be Cheerful at Mummy from the Heart

The summer weeks are sliding by, and we're doing less and less.  Perhaps we all need the rest. I know I do!  But I've managed to find some reasons to be cheerful once again this week...

Visitors


My brother and nephew will be arriving tomorrow for a long weekend.  There will be lots of lovely food, conversation and a few trips out too.  A mini staycation if you will...

Walking


My son is firmly attached to the sofa at this stage, but whenever he visits his Dad I'm taking the opportunity to take Smiley out for a walk, which we both enjoy.  I even walked into town with her, and I definitely earned my cappuccino that day!  We also dodged the rain showers in the Botanic Gardens, which are just 5 minutes away.  I am so lucky to live where I do, there's something to visit in every direction.


A real conversation 


I get quite lonely at times with my two younger children. There's lots of talk in my home, but very little conversation: Smiley can't reply with words that I understand, though she is great at the two way flow.  These days my son tells me about topics that he knows are of no interest to me - yep, you've guessed it, computer games.  He is bursting to tell someone, but I'm the only person available, so it has to be me.  Obviously I listen and that seems to be all he wants from me.  But this week there was one family walk (to the shop) and it included a long discussion about grammar of all things!  Which luckily is a subject that does interest both of us...   Hopefully there will be more conversations like this in the future.