Are autism parent-hating articles dangerous?

Because I think they are.  I also try to avoid reading them if I can, but sometimes I don't succeed.

Very few are blatantly anti-parent, and there's many articles out there that include lots of interesting ideas, and useful information, but so many of them also suggest that most autism parents do everything wrong by their children, up to and including murder.  It's not just the adult autistic community that criticises autism parents either: it's teachers, service providers, friends, family, parents, other autism parents, the general public.  Just about everyone, in fact.


Perhaps I am just too fragile to be able to cope with these messages.  I certainly never came across anything like them as the mother of a severely disabled daughter.  Most people are kind and supportive to me in that role, charities lay on wonderful events for us to enjoy, like the fabulous day we had on Sunday.  I thought I was a good enough Mum until autism entered my life: Angel's biggest complaint is that I used to make her walk home from the swimming pool!  Reading all the posts that demonise autism parents just sends my self-esteem plummeting once again.  If I hate myself, how can I help my children to feel good about themselves, and poor self-esteem is a big issues for many autistics.

What will happen when impressionable autistic teenagers start to read these articles and accept their subliminal messages that their parents are to blame for everything that they perceive is wrong in their lives?  How is that going to help them? How will they feel about being told that the two people who they should be able to count on to help and support them could actually be their worst enemies?  What will happen to their sense of security, safety and trust? Will it not just increase the anxiety that many of them are prone to already?

And then there's the effect on parents.  Knock them too much and they may just give up and let their kids face the consequences of their choices to play video games all day, and eat nothing but pizza.  After all, what's the point if they're going to grow up and blame the parents anyway?

I read another post recently that suggested that many parents drug their children for their own convenience.  Are psychiatrists really that gullible that they would prescribe drugs because the parents can't cope, rather than because the child needs them?  The post also ignored all the parents who choose to drug themselves instead - whether with prozac or pinot grigio - in the belief that it will help them to be better parents.

You see most autism parents are trying their very best, yet many commentators still expect us to have the stamina and feelings of robots... and you wonder why I wrote a post wishing that I could be a Stepford Wife - it had nothing to do with husbands.

Note: I wrote this after having my version of a meltdown on Facebook involving some of my friends.  I hope that they will forgive me.



A special Sunday sea trip

I'd forgotten all about it until I glanced at my diary this morning.  And then it became one of those mad list-making, running around mornings in order to get out to Howth for 11am and a trip on the Boat for Hope, organised by the Variety charity for children with special needs and their families.

Some very friendly pirates met us at the gates of Howth Yacht Club,  helped us on with our life jackets, and steered us to the boat where my lucky daughter was lifted on board by a posse of firemen, envied by most of the rest of us!


And so we set off on our adventure on the high seas, well the seas around Ireland's Eye anyway.  But there were more pirates, and even a pitched battle with the water balloons and cannons we found in our goody bags!



Once we'd outrun all the other brigs and schooners we relaxed and enjoyed the glorious views and the fresh sea air.





Back on dry land, there was a barbecue for all the hungry sailors, followed by glimpses of diving seals and Scottish pipers on the way back to the car.

It was a really wonderful day, and huge thanks to everyone who gave of their time to make it possible.




The soundtrack to my summer and other reasons to be cheerful

As I may have mentioned before, I love food when it's cooked by other people, and this week food plays a starring role in my reasons to be cheerful...

The birthday


Celebrations included a lovely birthday lunch with my eldest and youngest...

That is non-alcoholic Becks btw!


And later a birthday tea - consistently solely of chocolate cake, with all three children.

Flexible Friends


And I don't mean credit cards.

I mean the type of friends who when you tell them you're not sure whether you'll able to get a babysitter along, say "Bring Smiley!"  And then quietly adjust the get together so it works for her too, including adding mashed potato and muffins to the lunch menu.  It wasn't planned around my birthday, but it certainly felt like another treat!

The Soundtrack to my Summer


So my obsession with finding new music continues: I do try and restrain myself from sharing it all, because I don't think too many of you would be interested!



But this was one of the highlights of my birthday - Angel made a CD of all my current favourites.  And really, who need nostalgia when there's bands making music like this today?




You see while I may look like a middle-aged Mum in a sensible raincoat on the outside, inside I still think I'm Kate Moss :)

It's only a virus


There always seems to be something wrong with me, and it's got to the stage that I don't like bothering my friends with all my ailments, and I'm afraid to go to the doctor.  But finally, I did, and was sent off for tests, as per usual.  Scary things were mentioned, like Emphysema. The results came through yesterday, and it looks as though I've got nothing more serious than a virus in my lungs.  Annoying, but not likely to cause any long term problems.  I celebrated with a takeaway and a glass of wine.  Yep, more food.

Netflix


My daughter says that I'm not so good at spending money on myself, but with no likelihood of a holiday and nothing on TV, I'm going to actually pay for Netflix for a couple of months, as a summer treat.

Hope your summer is going well too.


Ojos World




"They're turning our school into a daycare centre"

That's the school that Smiley attends.  And that's a quote from the school principal, used with her permission.

The reason?  One teacher was cut from the school last year, and this year the Principal has been told that another teacher and two special needs assistants (SNAs) have to go.   Of course there is still no confirmation of these cuts, which means that staff and parents are left angry and uncertain and in the dark, even though the summer term ends on Friday.

It's a numbers game.  But it's the WRONG numbers game.

The school my daughter attends is now designated for children with severe and profound intellectual disabilities.  They may also have physical disabilities, and often complex medical needs as well.  Yet it appears that the same numbers game is being applied to all children with special needs, regardless of severity.  It's based on a 1993 report which recommends the following:

6 pupils = 1 teacher + 2 SNAs

Yes, Smiley's school also has 6 floating SNAs, but is that really enough to deal with all the toiletting, feeding, changing, hoisting, peg feeding, seizures etc, and give these children an education as well?

You see that's the big problem.  Of course the children's care needs are being considered, but what about their learning?  A survey by one of the teachers in the school last year suggests that pupils now get less than ONE HOUR of actual education every day.  The rest of the time is spent on their care needs. It wasn't always like this, before the cuts began to bite really hard.

Yet the numbers game is being played at Smiley's school because five pupils have improved so much that they are moving to schools for children with moderate or other disabilities.  The reduction in numbers is a success story.  But now the school is to be punished for its achievements.

I fought to get my daughter into this school to give her the chance to fulfil her potential, when I could find no other schools that catered for children with severe and profound learning difficulties.  She got the best education available.

Will parents still be able to say that in ten years time?

If they do turn her school into a daycare centre?





Will I ever?

See Paris in springtime?

Believe that my children can manage without me?

See the Northern Lights?

Feel grown up?

Visit New York, or Venice, or even Donegal?

Walk the Camino, even just a little bit?

Drive a sports car ?

Learn to ski?

Accept that I may never have grandchildren?

Go to a music festival?

Enjoy housework? Even tolerate would do..

Run 10K in under 60 minutes again?

Enjoy a weekend away with friends, without worrying about my kids?

Learn to drill a hole properly?

Read all those beautifully written books that are presently gathering dust on my bedside locker?



Stop enjoying blogging?

Lose that sense of wonder and hope when I watch the dawn sun rise over the rooftops?

Stop being grateful for my wonderful friends?

Forget the wonderful legacy that my parents passed on to me?

Change?

Will I ever really care if I all these things don't happen?  I've packed a lot into my life already.  Perhaps "Will I ever?" will become "Does it matter?"  Except for the good things that really do matter.  What do you think?


Inspired by a post on Facebook


Silent Sunday 22.6.14





Teaching the boy to iron

It was a gift.

"This is all creased, Mum," he said.

I don't remember him ever noticing creases before...

"Well, do you remember that you wanted to learn to iron?  Just like your sister?  Why don't I start teaching you now!"

Seizing the opportunity always seems like a good idea, until you actually do it, and then it's like, "Heeelp, how do I do this?"

A deep breath is always a good place to start.

Then what.

Something easy?

"First of all you plug the iron into the socket."

Cue howls of derision from a 13 year old who plugs in various electronic devices every day.

Hmmm need to restore credibility somehow.

I reminded him of our recent session on how to read a laundry label and got him to check the setting for the iron and switch it on.  Part one of the ironing challenge complete.

Looking good so far.

But I had forgotten one very important element.

The ironing board.

Or in our case, the old clapped out ironing board abandoned by the owners in our previous home because it falls down regularly, snags clothes and cuts fingers.

I did mean to replace it, honest I did, but it's somewhere on the list between the missing cooker knobs and the broken toilet...

So I skipped the lesson on erecting ironing boards until we have a new one, but I did let him loose with the T-shirt and the iron.  And it raised more questions than it answered.  How is it so easy to iron in new creases, even as you get rid of existing ones?  Why does the iron leave wet patches on dry clothes?  Why do sleeves not fit over the board?

I'm so looking forward to lesson 2 (not).

In the meantime I will be praying that the Dyson of the ironing world can come up with a better solution.  Gotta give that boy a good start in life, after all!

There must be something better





A birthday phone and other reasons to be cheerful

It's my birthday tomorrow and I'm not sure whether that's a reason to be cheerful or not!  So I treated myself..

Softening the blow


I couldn't think of anything I wanted for my birthday, with the possible exception of a new mobile phone.  I got lots of advice, both here, and on Facebook and Twitter and it did influence my decision.  As did an article about unknown - but fabulous - phones.  And in the end I decided to be brave, take a chance, and order something completely different.  So different that I could only find one - very unattractive - case available for it!   But the phone?  Well so far I am absolutely delighted.  Like most new relationships, there have been few misunderstandings. I've drained the battery, taken photos of my feet and even failed to answer one important call!  But I'm getting there, and it's fun finding out all the things it can do :)


The birthday phone


Making choices


Smiley is doing really well with making daily choices.  So well that I had to endure back-to-back Britney earlier this week, as she was determined to listen to nothing else...  Then yesterday she got the chance to choose the colours for her new hand splints.  Here she is, though the camera took the shot the second after she grasped the purple square.



The weather


Sunny summer weather has made me feel grumpy for the past few years...

My children want to stay indoors.
My hair turns to straw.
I sweat.
I can find NO clothes that I like that suit me, my age, and hot humid weather.
I develop a severe dose of cabin fever.

But this year I've started escaping.  Angel will be around for most of the summer, so if I really need a break, I can disappear for an hour or two to recharge the batteries.  Bliss.




Ojos World



The truth about the menopause

Do you really want to know the truth?

The menopause is a bit like childbirth, but without the possibility of a baby once you're done    Some sail through it with no symptoms and no problems.  Some stoical women just get on with life.  Some are saved by HRT.  Some swear by this potion, or that regime.  The rest of us just drink wine.  Even though we know it makes our symptoms worse.

Let me tell you a bit about my experience..

For me the menopause began eight long years ago.  Yes, eight.  So much for all those comforting articles saying that symptoms usually last for 2-3 years and some people don't notice any at all.  My mother was one of those lucky ladies and I stupidly assumed that I would be the same.

Possible Symptoms


(These are just mine, I'm sure there are many, many more.  One of my friends just blames everything on the menopause.  It's easier that way)

...Severe headaches

...Aching joints

...Night sweats

...Exhaustion

...Confusion

...Irritability

...Anxiety

...Depression

...Memory Loss

...Wrinkles

...Weight Gain

...The Hot Flash.  Queen of all the symptoms.

They will remind you of labour contractions, as they build like a wave...

1. You start to feel irritable.

2. Your ailments become ten times worse.

3. You begin to feel dizzy.

4. You have to stop or slow what you are doing.

5.  You can't think, you just have to try and breathe through it.

6. You start to heat up, it prickles and burns.  Then you start to sweat.  A scarlet flush may creep up from your chest.

7. Just when you think you can't take any more, it all fades away.  Until the next one.  Which might be 10 minutes later.

The pluses


It took me a long time to think of these...

...Bigger boobs (whether you want them or not!)

...No more periods.

...A final farewell to spot cream.

...No more fiddling around with bits of rubber.  Or whatever it is you use.  Except you can't do that immediately, or you could end up with a 'change of life' baby.  It does happen apparently.

...You can do as you please, and dress as you like.  Believe me, unless you're Sharon Stone no-one will care any more (with the possible exception of any kids you may have), and there's a certain freedom in that.  Time to embrace your inner eccentric!

What you can do


Well I tried everything.  HRT was wonderful, but did not agree with me.  I spent a small fortune on fancy supplements and special foods, none of which made any difference at all.  In desperation I even bought a 'magic' magnet that you put in your knickers....what was I thinking?



What does help


HRT: a miracle for some.

Exercise: even though you won't feel much like it.

A healthy diet: sounds boring, but you'll probably want to eat more healthily - munch on a burger and it will sit like a rock in your stomach, weighing you down and making you feel worse.

Friends: more important than ever.

Laughter: check out this fab page from Cate P and laugh at it all.

A little of what you fancy: whether that's wine, chocolate or crochet.  Anything to keep sane and provide a little distraction.

The great outdoors: perhaps that is why gardening is so popular with older women?  More than ever I crave fresh air and sunshine.

Antidepressants: Sometimes these really do make a difference.

There are many people who harp on about the menopause being natural.  So are lots of other horrible things: it doesn't mean that we have to put up with them.  

And the final truth about the menopause?  Just like childbirth, every woman's experience is different. Hopefully yours will be easy.


Decluttering and other reasons to be cheerful

A potpourri of reasons to be cheerful this week..

Learning about Autism


Who knew that a course about autism could be a break from special needs?  But it proved to be exactly that.  The course was also relevant and useful and provided free by the Middletown Centre for Autism*.  As were the coffee, cakes, lunch and parking; the only thing I had to pay for was babysitting.   I learned a lot, and enjoyed a bit of adult conversation, and the unusual sensation of sitting down for an entire morning!

Decluttering


In my ongoing campaign to keep calm, I find that getting rid of the things that weigh me down and keeping the house clutter-free is very helpful.  Even better when my son helps, and I'm able to pass on some our stuff to other families who will be able to use it - another gold star for Facebook.  Yes I do support charity shops too, but it's not the same.

Peace


Late evening, Smiley asleep, the others elsewhere on their laptops.  Silence, space and calm in the living room, just as I always intended.  A large mug of coffee and a new book.   Peace for a short while.  Rare but precious.

Sexual Harassment


That made you sit up straighter didn't it?  Well it wasn't really sexual harassment, though I might've called it that 30 years ago if I was in a really bad mood.  But with my 52nd birthday coming up next week, a beep and a wave from a man in a van was actually rather enjoyable (and I'm still a feminist).  I did check in case a bird had pooped on me, and turned around to see if there was someone behind.  Nope, neither.  So I managed to wave back without wobbling, and continued on my way with a wry smile.  Obviously the sunglasses must've helped, or perhaps he just liked my bike...



Ojos World


*these courses are free for everyone, this wasn't a blogging freebie




How to choose a mobile phone

Here's my dilemma:  I currently own a Nomia Lumia 520, which I love in every way bar two: the mediocre camera and the FM radio that does not work.  Actually the radio is the deal breaker, as it makes running a lot less attractive, and apparently it's a known problem, so I'm afraid that upgrading to a better windows phone (my preference) would not help.  Before you ask, I have tried different headphones, and I live in a good reception area and have never had this problem before with a phone radio.  Oh and Tune In doesn't work either.

My current phone

In theory I'd love an iPhone, but they don't have FM radios at all.  And I can't justify spending that much money on a phone either.  I don't need lots of Apps, I only use a small number, and they are all available on Windows.

In case you think I'm being extravagant, I'm expecting a long overdue cheque any day now, and it's my birthday in a fortnight...

Perhaps I should go back to Android?  But it's my least favourite operating system.  I find it messy, glitchy, I hate all the flashing ads, and I have to consult google if I want to do anything.

And which to choose?  There seem to be hundreds of them.

Here are my top two at the moment; both cost less than €200, and claim to have good cameras and radios that work.  I'd love to know what you think...

ACER Liquid E3 Duo (released April 2014 and has a 13mp camera)

Galaxy S III Mini (old, €169, good reviews)

I checked out the Moto G, but apparently it is good in every way apart from the FM radio and camera!

But then when I look at the clean lines, and the relaxing simple design of my 520 and I'm tempted to just upgrade to a Nokia Lumia 925, currently on special offer for €169.  Should I risk it?


After I die

After I die, what will happen to Smiley?

Yes, there are lots of people who love her and appreciate her, including her brother and sister, but who will take care of her?  I don't want her siblings to take on that responsibility, so who will make sure that she keeps smiling?  Who will do all the things that I do?

Here she is, in case you need an introduction 

Will she feel abandoned by the one person who was always there for her?

Can you explain death to someone who is severely disabled?  Or will she just sink into sadness until I am completely forgotten?

What sort of life will she have?  Will she be able to live with friends?  Or people that she finds entertaining?  Will anyone even consider that?  Or will she be expected to be thankful for what she is given... After all, God forbid she should be entitled to anything.  No worse insult these days it seems.

Will anyone have the patience to help her to feed herself?  To clean up the mess afterwards?  Or will they just feed her quickly, because they are under pressure to move on to the next person.  Sometimes I don't have the time either, or I'm embarrassed about making mess when we're out in public.

Will she be an embarrassment?  She can be very loud, especially when she is laughing with delight.  Perhaps her carers will think she is too noisy, and keep her away from other people.  Take her to out of the way places where she won't bother anyone.  She'll be quieter then too, and maybe they will think that she doesn't enjoy outings, and stop them completely.  It would be easier, after all.

Will anyone bother with her toilet training?  Especially as she will always need nappies.  Perhaps she should just 'go' in them.  That would probably save time and money.  Never mind her dignity and all that.  Never mind her pride when she uses the toilet correctly.  And then there's health and safety.  The equipment I use is old and needs replacing, but it seems that there are no companies that provide toileting equipment for floppy adults...

Will someone make sure that she is entertained: give her something to hold, something to watch.  Or will she just be left to sit.  Then she'll be quiet, she'll retreat into herself, she'll be easy to manage.

Will she still get chocolate cake?  Or will someone decide that she needs a healthy diet.  Even though she adores sweet things.

Will people still talk to her, when her replies will not be in words?

Will she have loving caregivers?  Or a succession of poorly paid and overworked helpers who do not have any time and energy to give to her.

Perhaps I am just being arrogant and unfair if I think that no-one else would look after her like I do - and I'm very far from perfect.  I've seen comments like that about mothers like me.  Perhaps she will adapt to whatever life throws at her, and use her winning smile to get what she needs.  Perhaps I am wrong.

But you know what?  I don't want to risk being right.  I'm her Mum, I don't believe that I can be replaced.  So I can't die, I just can't.  At least not for a very long time.

ADDENDUM


Since I wrote this post it has been nominated in the Irish Blog Awards, so if you enjoyed it I would be very grateful if you would vote for it by clicking on this link:

http://www.blogawardsireland.com/best-blog-post-2014/

Then clicking the icon next to 'Looking for Blue Sky'

And then scrolling to the bottom of the page and clicking the 'Vote' button.


The mini marathon and other reasons to be cheerful

Back to blogging as therapy for the next three months, and if you're a regular reader, you'll know why!  So there will be lots of reasons to be cheerful, and I'll do my best to keep it interesting.  Here's this week's reasons:

The Mini Marathon


This women only race used to be one of the highlights of my year, and I was feeling a bit sad earlier this week as I saw all the happy photos on Facebook from my friends who were able to take part.  Then I found this old newspaper cutting and remembered to be thankful for all the things I have achieved.  One day I hope to take part again, if my wonky knees and hips can make it around the 10K course..



A bit of R&R


Last Thursday was Smiley's first respite for 7 weeks, and I made the most of the day by taking it off.  Well apart from going for a run, doing the laundry, the meals, the cleaning and activities with my son.

Day off type things included wearing a skirt, spending lots of time on here, and going to the hairdressers and the cinema with Angel.

Best of all, when we got back from the hairdressers we found that teenboy had made his own lunch - tuna and sweetcorn sandwiches - and cleared everything away too! 

Starting as I mean to go on 


Which means lots of joint activities with my son and trips out with him and Smiley.  We're getting useful things done - like clearing out his room  - and visiting lots of interesting places..

Ardgillan Castle on a dull Bank Holiday Monday

Smiley spots the cakes!

Exploring...

The cure for brain fog


After an appointment yesterday morning I had brain fog.  I ran into Tesco and couldn't make any decisions about what I needed to buy, so I decamped to a nearby cafe for an unscheduled coffee and a bun,  It was the most relaxing break I had all week and will definitely be repeated.


Thanks to Ojo's World for hosting Reasons to be Cheerful this month, and why not join in, or add your reasons below..

Ojos World






What do teenagers DO?

There's an ongoing 'discussion' in this house.  Okay, so it's really a disagreement, but in the nicest possible way.  It's about teenagers and my expectations.  No, this is not a disagreement with the teenagers in the house, but with Angel, who is now 21.

She says that most teenagers 'do nothing' because of the Internet.  Sitting on the sofa all day with a laptop is entirely normal, and parents should basically be grateful if their teenagers get out of bed.


Here's the bit that I agree with..

A long time ago when computer use was in its infancy, I remember reading confident predictions about how they would relieve us from all life's boring tasks and give us lots of leisure time.  The first was partly true, but the second?  Well most people have to work harder than ever, juggling long working hours with micromanaging children, sparkling homes and filling in endless forms to satisfy the latest Government whim.  Not only that, but something has happened to our leisure time too.

My memory is that pretty pictures were painted of happy families running down the beach, pottering around the shops, feeding the ducks on the lake, walking on the hills, dinner out in the pub as a treat, sitting around the tellybox on a Saturday evening watching Dr Who.

Perhaps that is the life of some lucky people perhaps, but for the rest of us?   Well Smiley excepted, things are very different for my children's generation.

Why go to the beach and get dirty and sunburned and stuck in traffic when you could relax with your Xbox instead?

Why would you bother going to actual shops when you can sit in bed and order what you like from the Internet.  The stuff is usually cheaper, and you don't have to pay bus fares, parking tickets or clamping fees.

Dinner out in the pub at €100 a pop?  And someone has to drive too and sit there sipping an overpriced glass of water, unless you want to wait, and then pay an eye-watering taxi fare.  Doesn't a bottle of wine and pizza at home for €30, seem much more appealing?  Especially as babysitters don't need to be paid.  I'd not choose pizza, but that's just me.

Who watches TV now?  Not my kids, unless there's a very important match on.  Isn't YouTube and Netflix and a laptop all you need?

Angel's argument that teenagers can get and do everything they need on-line makes sense: TV shows, information, clothes, food, socialising, banking, even workouts.  They're all there.

BUT I think that most teenagers do other things too.  She certainly did.  There's teenagers who are sporty or enjoy youth clubs or scouts, others who like to party, a few who enjoy voluntary work, and those are just some of the ones we know.

I also passionately believe that they should do other things.  That you're missing out if you just stay at home all the time, especially during those years when you are young and full of energy and curiosity and spoiled with free time.  The whole world is not on the Internet, it's outside the front door, and I really, really think that all teenagers should understand and appreciate that.

But if Angel is right, then they won't.

Can you settle this disagreement?  Who is right?  Do your teenagers spend all their time on on-line unless you intervene?  Or not?