When is it okay for a young adult to be confined to bed?

When they have cerebral palsy and are living in residential care.  Apparently.

When I read that a parent claims that she is being denied proper access to her adult child because she has regularly queried aspects of his care, I was horrified.  Even more so when the care home in question is one that I was going to approach for Smiley's long term needs as I greatly admire the woman to established it.

Children like Smiley are SO vulnerable.  She totally depends on her carers to love her and look after her and give her everything she needs.  As her parent I expect the same from anyone who is minding her on my behalf.  We shouldn't have to complain.  We shouldn't have to question.  How can ANYONE not want the best for our very special children.  They have been dealt a difficult hand, but they deserve a good life, just the same as everyone else.

It looks as though I need to plan to live a very long time.


I never planned to print a press release on my blog, but today I am.  Please read it and do whatever you can to support this mum via the Special Needs Parents Association.

PRESS RELEASE Parent Removed from Laura Lynn Hospice by Gardai after making complaints about care. 

23rd February 2013


Cathy Andrews is undertaking a peaceful protest outside the LauraLynn Hospice (formerly known as the Children’s Sunshine Home) on the Leopardstown Road to highlight what she considers to be an inhumane and cruel set of restrictions imposed by the Director of Nursing, These restrictions prevent Cathy from being with her son Ronan, who is in long-term residence in LauraLynn. All other parents and family members have unrestricted access. 

The LauraLynn Hospice has a high media profile, designed to raise many millions of euro to provide respite care for children with life limiting conditions in a new purpose built unit. What is not generally known is that there is a group of young adults in residence in an older part of the building who have severe and profound levels of disability, some of whom have a short time to live and require skilled care. Cathy’s son Ronan is 25. He has severe cerebral palsy, epilepsy, a profound level of learning disability and a chronic lung condition. He has had a very difficult life and is often seriously ill. Cathy visits him very frequently to help care for him.

However, all is not well in LauraLynn. At times, the organisation has a poor and fractious relationship with some of the parents of long-stay patients. 

As with all facilities providing care for the disabled, the LauraLynn is not as yet open to inspection by HIQA, the independent health monitoring body. As a result, parents and family members have to take personal responsibility for ensuring that their loved one is being cared for in a proper manner. Many parents have found themselves fulfilling this role for many years. On occasion, this has led to conflict with management.

If parents make what the management considers to be too many complaints, or are very dogged and insistent, attempts will be made to silence them. This is often done in a subtle manner. Having driven parents to depths of frustration or despair by failure to respond properly to concerns, it is natural for parents to become angry and/or distressed at times. At this point the management can make an easy case that the parent is frightening or upsetting staff and is a threat to the smooth running of the establishment. The Health and Safety legislation is then used as justification for banning parents from the premises or imposing draconian restrictions on visits to their loved one. This is what has happened to Cathy.

Cathy has been a stalwart disability campaigner, determined to ensure that her son and other residents receive first rate care in Laura Lynn. She has been involved over the years in issues around patient safety, living conditions, hygiene and protection from abuse and has suffered a great deal of frustration in the process. On this occasion, she has been falsely accused of creating difficulties for staff because of her insistence that her son should not be confined to his bed, in isolation, for a large portion of the day. This she saw as a form of abuse. Cathy has done no wrong. The management action has imposed severe and punitive hardship on Cathy, who loves and cares for her son Ronan very much. Ronan has been deprived of his mother’s company, care and support at a time when he badly needs it. He is an innocent victim. This situation is outrageous and intolerable.

Under the management’s edict Cathy may only visit her son for limited hours during the week, and not at all over the weekend. In an attempt to establish her right to have access to her son at all times Cathy refused to leave Laura Lynn last Thursday evening, when her restricted time was up. She was then subjected to the humiliation of being escorted away from her son and off the premises by the Garda - at management insistence. You can call For further information contact Cathy Andrews 087-6616504 or email at cathyandrews21@yahoo.com


UPDATE


The very sad news has been announced that Ronan Andrews died peacefully on October 11th in the loving care of the staff of St Vincent's University Hospital, Dublin.  May he rest in peace.


Silent Sunday 17.2.13


Inspired by:


Silent Sunday

I miss my Dad when..

...when my daughter gets a first in Maths and IT, just like him.

...when I got a job, and there was no one to tell.

...when we get up early in the dark, but it's not to catch the ferry to Wales.

...when I'm eating cereal in the morning and I remember the last time he looked well was one morning eating breakfast as I waved goodbye before heading back to Dublin.

...when I need to be inspired.

Aged 80. Atop a "Munro"

...when I realise that I'll never know if he had Aspergers.  See the photo.  He collected trig point numbers.  At my suggestion.

...when I remember how I could have a moan and a joke with him in the same breath during our daily phone calls.  Perhaps that's why I don't like ringing people any more.

...when I look at the state of my garden and think, God I could do with some good advice, I'll just ring my Dad.  Oh.

...when I'm feeling worried or overwhelmed and there's no-one to tell.

...when I don't know what to do, and I don't know who to ask.

...when I think about those evenings we spent sipping red wine and putting the world to rights.

...when I know that it's all up to me now.  And will be.

...when I realise that I didn't appreciate my parents enough when they were alive.

...when I realise that I'm nobody's child now.

That's when I miss my Dad.  Every day.


I'm not a bad parent, but what am I doing wrong? #aspergers #autism

Smiley's school report is almost the same every day - at least since Christmas, when I made some changes:

She was on great form today, she did some 1:1 object exploration work, went to the darkroom and participated very well in sensory sport in the afternoon.

But despite everything I've tried, aspie boy still comes home with some really bad reports.  Like today's, which read a bit like this:

He had a bad morning, refusing to do any work due to 'exhaustion'. After an hour's rest he was given his school work for the day so that he would not have to do it for homework.  He got very angry at the mention of homework and started shouting and throwing things at staff, and was also aggressive at break time. 

The exhaustion was apparently due to Sunday activities (of which more in a minute), which means he's blaming me.  The anger was due to the threat of extra homework, ie his teacher's fault *sigh*.

Sunday started off madly, with a meltdown at midnight.  It was all about fears and obsessions.  I've tried to be understanding, but sometimes they are very hard to believe.  Especially when they are not consistent.  He says it's complicated.  But I don't understand how he can run upstairs one minute to ask his sister to order pizza and then have a meltdown when I refuse to accompany him to the bathroom.  Which is what I did.  And as his meltdown got worse, I just shut down. So everyone woke up in the house and probably several ones nearby too.  It got sorted of course eventually.  And he was actually penitent the next morning, so penitent that he agreed to stick to the plan to go on an outing to a playcentre organised by a local autism group.  He thought he'd get bored, but I didn't see him for two hours!

A successful day?  Well so it seemed.

Today's behaviour just came out of nowhere.  At least to me.  What tripped his switch this time?  Could he really be exhausted 24 hours later after a bit of running around?  I am too close to see what went wrong, can you?

****You'll note that I'm writing about my son.  Again.  You see he'll be starting secondary school in 6 months time, and I don't think that this kind of behaviour will be tolerated then.  I have to find a better way of parenting.  So all insights are welcome.  And even though I have no spare time, I have signed up for RDI.  I've tried everything else....****



Do you visit the local library?


We rarely do.  It's probably yet another black mark against my parenting skills.  But I tried, I really did.

Inspired by childhood Saturday mornings spent trawling the shelves for something new, exciting and unread, and afternoons perched high in the branches of the tree at the corner of the garden head buried in my latest find, I did my best to pass on my love of books to my kids.

It didn't really work.

I have a house full of books, they've seen me read, I read to them religiously every night until they reached the age of 9 or 10.  I don't buy toys on request, but I will pay for any book if they promise to read it.  It wasn't enough.  Sadly I don't think that Smiley will ever read, but she has a good excuse, while my son and oldest daughter seem to find the on-line world more interesting.

I did try to interest them in the local libraries.  Sometimes they were open when we visited, sometimes the children borrowed books, but they often did not look at them.  I often wanted to order books, but that seemed to require 3 visits to the library, one to order the book, one to collect, and one to return it.  And you had to pay.  Downloading new titles is a much easier option for someone like me who has little spare time.

But there are plenty of people who DO have time on their hands.  I've seen some of them at the library: older people, young families bringing children in for story-telling,  middle aged people who are maybe out of work.  The library is a warm, safe place for them, to relax, to learn, to research, perhaps even to socialise.

Today is National Libraries Day in the UK and there is much wringing of hands about the closure of local libraries and a hollowing out of the services.  But perhaps libraries need to change, need to think about how they could change and adapt and fill gaps in services.

There's so much talk about the demise of the local pub, about the need for people to have somewhere to meet.  Why not add a social role to libraries, built around books?  Why not add a cafe and toilets, so that people could spend as much time as they wanted there.  If pubs are closing because of the drink driving laws, perhaps libraries could become a social hub for communities?  Tea, coffee, buns and books: that could work, couldn't it?  Keep the free wifi, and add a meeting room or two.  Who knows, perhaps books could be the next big thing?

Inspired by a conversation on twitter this morning.

His first exam #aspergers

It was actually a test.  An assessment test that all the children take before joining the secondary school.  No-one 'fails' it.  No-one fails to get a place.  It's just to assess the strengths and weaknesses of the new intake.  Apparently.

That did not stop all the boys calling it an 'entrance exam'.  And for the past week or so, my boy was getting more anxious and more hyper as every day passed.   He wasn't too worried about it being difficult, oh no!  His worry was all about having to sitting still for three hours.  We talked and talked, and scribbled notes went back and forth to school.

Yes, there was a short break mid-morning.

Yes, his SNA would be with him.

No, he didn't have to stay until the end.

Still the anxiety levels increased.  I introduced bribery, and the promise of lunch out afterwards in the cafe by the park that does the yummy smartie cookies (and nice coffee for Mum!).

But this morning, with just an hour to go, he was still saying that he couldn't do it.  8am came and went, somehow I stayed calm, and something I said must've got through ... if only I could remember what it was...  Because he finally got up, ate something and reluctantly got on the bus.

Then I waited.  Phone close by, just in case.

At 12.30pm I left the house, with big sister Angel, and we headed for the school, and waited in the entrance hall and tried not to look at the double doors that stood between us and the school hall where the test was being held.

Two boys went in.

Two boys came out.  Different ones.

The test was due to finish in a few minutes.

Then, finally, he emerged, with his SNA, looking slightly embarrassed, and barely acknowledged us as he went back up to his classroom!

Perhaps he needed a few minutes to process the experience?  Shortly afterwards he appeared on the stairs, with coat and bag, and hood tightly fastened.

"It wasn't as stressful as I thought," he said.

You could have heard our sighs of relief from a mile away.

Support from the big sister

Silent Sunday 3.2.13



Inspired by:

Silent Sunday


Dilemmas and getting phones for a child with autism

A broken iPad, an inconsolable child with autism.  His Mum is a friend,  and I promised to try and help her to collect 165 old mobile phones so she can get a replacement through the Irish Autism Action mobile phone recycling scheme.

Normally the iPad helps him with his

...communication

...learning

...organisation

...fine motor skills

...relaxation

...behaviour

He really really needs another one.

I asked the families who go to the Rainbow Junior Arch Club - Smiley's Saturday hangout.

I asked on my blog Facebook Page.

So now I have ten old phones and a few more promised.

But I need more.

I keep being told that everyone is collecting phones.

So what to do?

Well I decided that I would have to step away from the Mac and ask those people to whom I am not connected on here: the neighbours.  It's going to be interesting.  Nobody asks anyone for anything much around here.  Perhaps to keep an eye out if they are away.  There's the odd invitation to a charity coffee morning.  I don't usually go.  So what to do?

...Knock on doors?  No way, there are few things that I would hate more.

...Put a note in the parish newsletter?  There's not enough time, though that worked for me once before.

...A flyer?  Surely that would just go straight into recycling.

...A personal letter?  Possibly.  Actually yes, that might do it.

It took a while to draft and then I had to wait until I could actually get out of the house to do the deliveries.  More dilemmas: do I drop it at every house, or will that annoy some people?  And what if there is a 'no junk mail' sign?  Will they come after me when they see it?  What if I bump into them, I'd better have some words ready!

Finally I slunk out under cover of dusk and delivered a letter to any house where I at least vaguely knew who lived there.

And now I'm waiting for the phone to ring... I hope it does.

This is AJ.



And you can read more about him by clicking on here.  And if YOU have any old mobile phones that you can post to AJ's family please send me an email and I'll send you the address.

My email is stilllookingforbluesky at gmail dot com.

THANK YOU!