Extremely Loud and Incredibly Close: DVD REVIEW

You know that thrilling feeling when you see 'your' child, in a book or on TV, or in a film.  That was me this week when I finally got to watch Extremely Loud and Incredibly Close.  The star of the film is an 11 year old boy with Asperger's - just like my son - who roams New York with his Granny's mute lodger to solve a riddle left behind when his father dies in 9/11.

The film had some dreadful reviews, features an unfortunate use of the  the 'r' word - I mean, why? - and yet was nominated for two Oscars.  I could describe it as a sugar-coated heavy handed morality tale with lots of cringy moments.  But I won't.  Because I watch films for entertainment and at that level it was great.

It's a quest, an adventure, a boy learning about himself and how to overcome his fears - a big problem if you have Asperger's.



It showed the need for control and order, and the charm and intelligence that I see in my son every day.

There are also entertaining characters, great acting and the fabulous diversity of the New York streets.

But for me this film really was mainly about a boy with Asperger's, here presented as positive but quirky.  Perhaps it might be a good introduction for a family who've recently had a child diagnosed?  Even better if it was possible to 'bleep' out the 'r' word.  Actually I don't know why they didn't just change that line before it was released on DVD....

Have you seen the film?  What did you think?

Disclosure: This DVD was provided to me for free to review in my own words.  I only review stuff that is actually of interest, and again, this was!  I've one more review AND a giveaway to do and then it'll be back to wordy stuff for a while..

The facts bit:



Genre: Emotional Drama
Film running length: 130 min
DVD Release date: 01/6/2012
Directed by: Stephen Daldry
Distributor: Warner Bros Distributors Ltd
Stars: Thomas Horn, Tom Hanks, Sandra Bullock

Escaping at bed time

My feet have gone to sleep.   I try to move them but the narrow corridor by the bedroom door is less than 3 foot wide.  I'm wedged in like Alice in Wonderland.  But without having eaten any cake.   Any further into his room and I'd be failing in the programme to get mammy downstairs.  His psychologist says I shouldn't be in his room at all.  And certainly not for most of the evening.

Any further out of the room and there will be loud objections.  If he sees.  I'm trying to get closer to the door, it's in the programme.  But progress is not being made.

It's my boy you see, and his Asperger's.  He says he's afraid.  He wants me to stay until he is asleep.  But of course his psychologist says that can't continue.   If you're a mum, especially a tired mum, you'll know that changing some routines can seem almost impossible.  And the worst time to try and change things is at night when everyone is tired and cranky and you're just longing for some child free task free time to close the day.

Tonight he was tired.   All went quiet and i escaped soon after 9.  I was just sitting down when I heard it:

"Mammmmeeeee!"

Remember he's not 3, he's 11. But in this house that doesn't seem to matter.

Back up the stairs I went, the toilet was visited, the iPad was retrieved (it's silent you see) and a glass of wine poured (stress levels are hitting the red zone). And down I sat again, squashed in between the implacable walls.

He's quiet again.  But is he asleep? The stress is in the wondering.  How long is the wait going to be? And watching the down time vanish away...

Last night I enjoyed lots of free time as the birthday celebrations continued.  It was amazing!  Tonight it was back to business as usual, and not just from my son....

Dear So and So: A special post for carers week

It's carers week again and the the media is full of stories about how caring makes you sick and poor. And for many, this is true, I know.  But caring is a choice, even when the alternatives look grim.  And when caring gets difficult, I don't want your pity.

I want this:

---------------

Dear friends and family,

I want nothing more than the support, understanding and acceptance that you all give to me now.  In spades.  You are all amazing.  Not everyone stays involved when special needs enters a family.

---------------

Dear children's hospital,

Carry on caring.  You're the best.

---------------

Dear Irish Health Service,

I dread the day that I have to bring adult children to accident and emergency.  Please look at the local children's hospitals and copy.  Note that they do not tolerate drunkenness or abuse in casualty.  They look after patients and their carers.  They even give us food if we are hungry and a drink if we are thirsty!  Why should an adult hospital be any different?

---------------

Dear Schools,

I really appreciate everything that you do for my children, but remember that I have more than one child. Until recently I had three children in three schools in different directions, with different holidays.  I can't attend everything that is held in school hours, nor can I attend evening events unless I can get a babysitter.  I need notice too, and a note or text would really help: children are not reliable messengers, especially when they have special needs.

---------------

Dear Service Providers,

The clue is in the description.  You are meant to be providing a service.  Not building shiny new headquarters. We'd rather have new wheelchairs for our children.  And this service is for children and their families who all have different needs.   We need a service that looks at our children as individuals.  Imposing one policy or one solution does not work for everyone.  We need flexibility, not rigid rules.  And while you're at it, please stop piling on the bureaucracy in the name of health and safety and fairness.  All we seem to get is worsening services and slower delivery.

Also remember that meetings alone do not help my child.  Action does.  If you are having a meeting about my child, I'd love an invitation.  As a parent I should be involved in the decision-making process.  And copy me on emails.  Especially if they're important.

And finally please listen to parents.  Especially if we're begging for help for our children: we're only doing it because they NEED it.

---------------

Dear Government,

Carers save you millions of euros every year by looking after their loved ones at home.  Stop making it so difficult.  Benefits are essential for many families who cannot hold down employment due to the amount of time and effort needed to look after their loved ones, carry out therapy, fill in forms and attend appointments.  Every family should have a support worker who actually KNOWS about all the benefits and services that are available and then TELLS the family.  Applications should be simple and streamlined and surely one application should be sufficient for everything.  And finally for all the @DCAWarriors, please remember that there is no 'cure' for autism, so stop taking their benefits away!

---------------

Dear Everyone,

I don't want your pity.  Not for me, and not for my children.  Our life may be different to your life, but it is not a lesser life.  I just need you to understand when I'm too tired to talk to you on the phone, when I have to cancel plans at the last minute, when I can't come to your meeting or event because it runs over school finishing time, or meal time or toileting time or bed time.

I want you to design buildings with lots of ramps, with HUGE disabled toilets.  Believe me, we need them.  Even better if they could have hoists as well.

I want more events that cater to children with special needs, especially sensory needs.  Every family should be able to be part of the community.

Remember that I don't always know what I'm doing.  I have tried to become an expert on my child's problems, but I don't have a degree in special needs, and sometimes I get things wrong.  

I'm just trying to do the best that I can.


Dear So and So...

On turning 50


On Tuesday I wanted the clocks to stop.  Could I not just stay 49 forever?  I was mourning the loss of my forties, the last vestiges of youth and feeling fearful of the years ahead.  Of course the day flew by, especially as I made sure that I kept very busy... And stayed up until the bitter end.

My actual birthday began at six with aspie boy singing Happy Birthday, and Smiley needing a nappy change!  I looked in the mirror, and I looked the same.  What was I expecting?   But change is needed.  The last ten years have been difficult, and my 50th birthday is as good time as any to close the door on one decade, and plan for a better one.  I began my new campaign with an alfresco coffee that was nearly shared with a friendly gull.

Next stop was a wardrobe update: I've grown older and larger, and I have no work clothes that fit, and no interest in trying to find them.  So I used this free service.


Then a quick dash home to find lots of lovely birthday wishes, cards and beautiful flowers.  But one thing was missing.  And then, at 11 am it arrived: a text from Tanzania from my lovely daughter!

Back out again for lunch with a friend.


An afternoon spent working and caring for the kids was followed by an evening 'date' with my son to see a musical theatre production at his school.  It was just lovely, the kids acted and sang their hearts out!


As we were leaving the first rain drops started to fall.  But until then, the sun had shone all day.  I'm hoping that this is a good omen for my next 50 years :D

Quiz time: Are you a grown up?

Do you remember all those magazine quizzes?  About whether or not you're a good friend, or a bad cook or a disorganised worker?  Well I haven't bought a magazine in years as almost everything I need is right here in my computer.  But I miss the quizzes, so when I spotted this one on At Home with Mrs M, I just couldn't resist. Albeit a bit late.  Feel free to join in...

The signs of being a grown-up:

1. Having a mortgage - Yes.

2. Mum and dad no longer make your financial decisions - Sadly, they can't anymore.

3. Paying into a pension - A few euro here and there.

4. Conducting a weekly food shop - For too many years.

5. Written a Will - Not yet, am still hopeful they might find a cure for death before I need one...

6. Having children - Rarely seen without them.

7. Budgeting every month - Never, I just don't spend what I don't have.

8. Being able to cook an evening meal from scratch - Sometimes I wish I couldn't!

9. Getting married - I did...

10. Having life insurance - Nope, how much would they charge for a decrepit 50 year old?

11. Recycling - Yes.

12. Having a savings account - Yes.

13. Knowing what terms like 'ISA' and 'tracker' mean - Not really.  I did put money into property *ouch*

14. Watching the news - Just try keeping me away!

15. Owning a lawn mower - Does a Flymo count?

16. Doing your own washing - I have a washing machine for that :)

17. Taking trips to the local tip - Where is it again?

18. Planting flowers - I am able to do this, does that count?

19. Being able to bleed a radiator - I have been given instructions but not had the nerve to try them yet..

20. Having a joint bank account - Had, now the lack of money is all mine :) 

21. Having a view on politics - Too many views I suspect.

22. Keeping track of interest rates - See no 14 above.

23. Finding a messy house annoying - Only if I step away from the laptop.

24. Being able to change a light bulb - Can anyone over 18 seriously not change a light bulb?

25. Owning a vacuum cleaner - Yes.

26. Holding dinner parties - *runs a mile*

27. Listening to Radio 2 - Not in Ireland so I can pass on this one #phew

28. Enjoying gardening - A bit more than housework anyway.  Flowers last longer than clean floors..

29. Spending weekend just 'pottering' - Remind me what that involves again?

30. Mum starts asking you for advice - It never happened sadly.

31. Carrying spare shopping bags just in case - Always.

32. Like going round garden centres - Sometimes, but I still end up buying the 6 pack of pansies in Lidl.

33. Wearing coats on a night out - Yes.

34. Going to bed before 11pm - Rarely.  That dishwasher has to be loaded!

35. Making sure mum and dad are phoned at least once a week - I wasn't great at this until they got old.

36. Classing work as a career rather than a job - It's my sanity :)

37. Repairing torn clothing rather than throwing it away - Yes, and I enjoy it, especially as I use my Mum's old sewing basket, the main thing I wanted after she died.



38. You iron - I never understood ironing so it only gets done just before wearing.  And that still doesn't stop my son from crumpling it all up again!

39. You wash up immediately after eating - Never, there's always playing and toiletting that needs to be done.  Much more important.

40. Enjoy cooking - Only baking.  Is it possible to enjoy cooking chicken burgers?

41. Buying a Sunday paper - I always buy one, and it's become a little Sunday tradition that I head out with my son and the two girls stay at home.

42. Always going out with a sensible pair of shoes - Are three inch heels sensible?

43. You like receiving gift vouchers - Absolutely :)

44. Work keeps you awake at night - Not any more :)

45. Filing post - Regularly in my set of tabbed lever arch folders, hope this doesn't scare you...

46. Having a 'best' crockery set - No I believe in using everything.  That occasion may never happen.

47. Being able to change a car tyre - I can change a wheel, but I'd rather not. Thank Goodness for Protex.

48. Being sensible enough to remove make up off before bedtime - Usually.

49. Being able to follow a receipt - Er yes.

50. Owning 'best towels' as well as 'everyday towels' - I have never heard of this concept before!

Apparently if you check more than 30 of these, you are definitely a grown up.

Personally I always thought that the definition of a grown up was someone who owned a strimmer...

So are you a grown up?

One year ago today: a #specialsaturday post

One year ago I was nearly 49 and already reflecting on middle age.  Now I am rushing headlong towards my 50s and by this time next week I will be eligible to attend events that feature incontinence wear and funeral planning.  I'm soooo looking forward to it!  Just my thing...

Twelve months ago, my eldest daughter Angel was taking her final school exams.  Now she's all grown up.

For aspie boy 2011 was the year of the mega meltdown.  June wasn't the worst month, but his anxiety levels were building as the summer holidays drew near.   We finally got help in September and since then his behaviour has improved.  He is much more mature and aware and I am better able to cope as well.  We have not reached meltdown at all in 2012, so far.

Last year was also the year that I lost my Dad, and tomorrow is Father's Day, so the memories are crowding around me right now.  But I still keep pushing them away as I cannot yet write or think about his death without tears.  My only consolation is that I spent as much time in Wales as I could during his final months.

And Smiley?  Well she is a little bigger, a little tighter in some of her muscles, but basically still the same :)

One year ago today #specialsaturday began.  It was the brainchild of Wendy, an inspirational mum of four kids, three with autism and other special needs.  She is currently recovering from two strokes.  Special Saturday was set up to improve awareness and increase understanding of special needs.  It is now a global campaign.  Join in by 'liking' the facebook page - http://www.facebook.com/SpecialSaturday; following on twitter - @Specialsat and retweeting hashtag - #specialsaturday; or reading and following the Special Saturday Blog : http://specialsaturday.org/



Happy 1st Birthday Special Saturday!

And may there be many more...

The wonders of modern medicine and other #R2BC

I spent a night and a day at the local children's hospital this week.  All is now well, but I definitely need to find some reasons to be cheerful as a result.  So here they are:

...Other people. From the wonderful nurses whose patience never faltered as casualty was overrun with worried families, to friends both on and off line who gave support. There's something special about children's hospitals, and I always feel safe when we are there, that nothing really bad can happen.  But I'm still glad it's over!  Then there's the kindness of the builder friend who checked the cracks in the walls of my house and told me definitively that I don't need to worry about them or spend money getting them surveyed.  What a relief! All I need to do now is learn about repointing.  Hmmmm.

...Modern medicine. All three females in this family have not been right for a while. And while the medical bills are going to be HUGE, finally it looks as though we've turned a corner.  Angel's foot problem that dragged on for months turned out to be not athlete's foot, but a rare form of dermatitis, diagnosed after I finally gritted my teeth and took her to a private consultant to get it seen.  Of course he had the problem diagnosed within minutes, and the special ointment cleared everything up in a couple of weeks. Just in time.  As her foot HAD to be better for her trip to Africa where she is currently volunteering in a children's orphanage.  And luckily, she is having a ball.


As well as the photo proof, I know this because she hasn't been in regular contact. Always on previous trips away there would be a running commentary by text and signs of homesickness. But not this time!

Smiley has also had her problems, and with no speech they can be so hard to diagnose. When her legs first started giving her pain I took her to Casualty, but nothing could be found, no injuries, no blockages. But the problem remained, and she got more and more miserable. A trip to see her orthopaedic surgeon has her now on Baclofen, which is helping the legs, and a visit to the GP has her on antibiotics. Finally my girl is smiling again!

And as for me? Well my little problems seem to be clearing up too. For now at least.

...My job.  Okay some of you know about this, but I am just so delighted to be working for a really good cause: raising funds for kids in the UK with autism and providing other kids with iPads through an old mobile phone recycling scheme.  Please, please tell anyone you know who might be intersted and send them over to the Hearts and Minds Facebook page.  As for me, well my new job means I'm basically being paid to hang out on Facebook and Twitter. What's not to love!


Reasons to be Cheerful at Mummy from the Heart

JOURNEY 2: THE MYSTERIOUS ISLAND: The DVD Review


I missed the knock on the door.  But oh the excitement when I saw that I had to collect a mysterious parcel addressed to Looking for Blue Sky. A little surprise for my son.


Unfortunately he was not impressed.

"I didn't ask for that," he said "I don't want to watch it."

But my wise Facebook friends suggested that I go ahead with a viewing anyway. And so it was that at six o'clock I invaded the living room with Smiley, the DVD and popcorn in tow.

My son was staring stonily at his laptop as I sat down and manoeuvred the wheelchair into position, but as the film started with a car chase, it was only minutes before his eyes began straying towards the screen.

As for Smiley? Well she was mesmerised from the start, and once the action shifted to the island, she entranced by the music, the colours, the giant butterflies and the ever changing scenery.

It was like an old style Disney movie, a family adventure and morality tale, with a teen romance, a few scary bits and a satisfying ending, but using all the wonders of modern film production.

There were a few corny moments too:

"You saved me!"

Guess who says that?

But it was fine - I wasn't expecting Shakespeare.   I was expecting an entertaining family movie that we could all sit down together and watch, something that rarely happens. And that's exactly what we got.

The word "good" was mentioned by my son, but it is Smiley who has benefited the most from this film.  I haven't been able to take her to the cinema for many years, and she has refused to watch anything but a small number of music videos.  But since Thursday (yes, it has taken me this long to get around to writing this) she is watching a whole variety of films.  I am really very happy about this as it has to be good for her to see new material.  We *may* even have to get JOURNEY 1....

Disclosure: This DVD and the other goodies have been provided to me for free to review in my own words. I only review stuff that is actually of interest, and this certainly was :)

The facts bit:


TITLE: JOURNEY 2: THE MYSTERIOUS ISLAND
RELEASE DATE: 28 May 2012
RUNNING TIME: 95mins
CERTIFICATE: PG
GENRE: Action Adventure



Directed by  BRAD PEYTON  (Cats and Dogs: The Revenge of Kitty Galore),
JOURNEY 2: THE MYSTERIOUS ISLAND is  loosely  based on the Jules Verne’s
novel The Mysterious Island and stars DWAYNE “THE ROCK” JOHNSON (Fast 
and Furious 5, The Scorpion King),  MICHAEL CAINE (The Dark Knight Rises, 
Inception), JOSH HUTCHERSON (The Hunger Games, Journey to the Center of 
the Earth), VANESSA HUDGENS (High School Musical franchise, Sucker Punch), 
LUIZ GUZMAN (Carlito’s Way, Boogie Nights) and KRISTIN DAVIS (Sex and the 
City, Couples Retreat).

This is what respite means to me

What does respite mean to me?

...hours of free time as my other children can dress, feed, toilet and move themselves.

...meals whenever, wherever.

...no need to plan the day around meals and toileting.

...going to the beach, or the hills, or the park on the bikes, or up steps, or over stiles, or through woods.

...being able to say "In the car now, kids", and they can do it themselves.  In a few seconds.

...going to the cinema without paying a baby sitter.

...when the children are asleep, they're asleep. Well mostly, unless there's night frights or sickness or late night partying. That's my teenager you understand. But no 'accidents' at 11, or position changes at 3.

That's when my disabled daughter Smiley is in respite.

...remembering all the things my son can do but won't (see above).

...a break from the endless monologue about the latest game.

...cooking proper food and everyone eating it.

...going shopping, or coffee and cakes, with my girls and other friends.

...not having to preplan everything I say.

...not having to prepare a strategy for everything from dressing to homework to bedtime.

...not having to check every room for moths, spiders, flies and then remove every trace.

...not having to accompany and stay with him every time he goes upstairs.

That's when aspie boy is in respite (well at his Dad's).

I love all my kids, but sometimes it's good to get a break.

I can breathe.

It means I get the chance to be me.  Just for a while.

And the reason that I wrote this is because respite is under threat.  For all carers.  Many of whom need it far more than me.  It seems that the Irish Government may stop funding respite, so that families will have to pay for it.  Not all families will be able to, leaving them heading for breaking point, squeezed between funding and service cuts.  Respite helps families to keep going.  To keep caring.  It is vital.  

Respite. Recharge. Relax. Rethink. Return, refreshed and ready.

In Bloom


A long time ago I grew up in a small market town, with a disco, a youth club, a cinema, a coffee shop, a recording studio and a few shops.   Like most teenagers I thought that there was "nothing to do", so we did it all.   And doing it all meant going to all the local events: The boat race, the town carnival and even the county agricultural show.  Those were more innocent days, before car parking charges and burly bouncers who confiscate your plastic bottles of water.

But times change.

Whenever a new event, or worse, an 'experience' was launched in Ireland during the Celtic Tiger years, the next day's talk radio shows would hum with the sound of disappointment and righteous anger, over rip-off prices, long queues and poor exhibits.  You wouldn't catch me going to anything like that.  Oh no!


That was then.

Now that we can no longer hop in the car and head for the gorgeous countryside and beaches of County Wexford, I have to organise things closer to home.  Especially when the kids are off school and there are hours to fill.  Last weekend that meant Bloom 2012, a show with flowers plus.


Normally I'd run a mile.  I'd rather see flowers dancing in the breeze in a meadow on a sunny day or clinging to a cliff side, or trees in a wood standing knee deep in bluebells.  None of these are wheelchair friendly though.

So it was with low expectations and some trepidation that I headed for Bloom last Saturday as an outing for Smiley.  The skies were milky grey as we drove away from the house, and before long I could hear the plinkety plink of raindrops on the windscreen.  I sighed as we crawled the last mile.

But then we arrived and everything changed.  Disabled parking was provided right at the entrance.  No hauling the wheelchair through ruts and puddles.  In we went and it was not as I had imagined - sweating and queuing and apologising.   We missed the early morning sunshine, but the only thing the drizzle spoilt was my hair.  Yes there were crowds, but we could move around, despite Smiley's chair being the size of a small tank, and she lapped up the activity and the crowds and the excitement.  She wasn't that impressed with the flowers, but I think she liked everything else.  She ate chocolate muffins in the rain, and giggled - loudly - at the crowds hiding from the weather in the tents, and 'talked' to the animals.

I wasn't really looking for plants so after a couple of enjoyable hours meandering around the exhibits I left with a free paper, a yoghurt and a packet of sunflower seeds.  Other people did buy stuff.


It wasn't nirvana.  But it wasn't bad either.

Do you enjoy events like these?

Disclosure: This was not a sponsored post or a review, I just felt like writing it. 



Is it THAT hard to be a Mum?

Things change when you become a mum and no one tells you how difficult it can be.  And you wouldn't believe it if they did.   But really, is it THAT hard to be a Mum?

Reading this post made me smile, but it also made me cringe.

Mothering is the most important job in the world, and looking after small children 24/7 is incredibly tiring.  Your work is never done, and you get no pay, just blame if your kids are not perfect.  I know I moan *occasionally* but I wouldn't be without my kids.  When mothering becomes difficult it's not usually because of the children.  It's due to poverty or sickness, or lack of understanding or support for special needs or problems at home.

I'd much rather be a mum than any of these:

... coal miner

...leper

...cancer patient

...chugger

...A&E nurse

...door-to-door salesman

and many more!

What do you think?  Have I just lost my sense of humour?

12 months after becoming a Mum and I'm still smiling :)

Necromancers at dawn

Picture the scene.

It's 6 am.

On a Sunday.

"Muuuum!"

Make it go away.  Muttered.

"MUUUUUUM!"

"Yes?"

Said in a resigned voice.

"I want to get up!"

"Son, I really need to sleep."

The door opens...


"You're yawning!"

"I know. I'm tired!"

"Well, then. Go. Back. To. Sleep."

"No. It's boring."

ARRGGGHHH! 

Rolls over and tries to stuff duvet in ears.

"You know that necromancers are really cool?"

"Whaaaaat?"

"They bring back the dead to fight for them."

"I really, really don't care, I just want to sleep..."

Whispered.

He's 11.

Tell me, will this ever stop?

Time to shout stop in Syria

I couldn't watch the videos.  Even reading about the massacre in Houla made me feel chilled to the bone.  My nice safe world that I moan about felt rocked by this killing of innocents.

Families in their own homes, where they should be safe, the doors bursting open and terror entering.  The killers went from house to house, can you imagine the overwhelming fear?  Did these people know what was happening to their neighbours?  Were they too petrified to run? Did they have no clue what to do?

I've been afraid at night too, but now I feel like a pathetic fraud.

I will look at my own children and be thankful for our happy safe lives.

But something has to change.  Every child deserves the chance for life.  And NO CHILD should die in pain and terror at the hands of merciless killers.  There is never ever any justification for taking the life of  a child.

This has to be a tipping point.  It's time for world leaders to stand up and stay stop.  And to make it happen.

I've written this in support of the #Britmums Syria Day of Protest.  And you can help too by:


Signing the petition from Save The Children.
Signing the petition from Amnesty.
Joining the protest of mothers, parents, grandparents and children, in London on 10th June.
Blogging, tweeting* or sharing on Facebook.


*Please use the hashtags #tippingpoint #syria #stopthekilling