The best Christmas ever?

Not really relevant, but it is Christmassy!
It worked.

Christmas asperger-style has been a success.

So the big day started early, at 3.30 am, but he actually tried to back to sleep, for an hour and half! That's pretty impressive for a child who has been looking forward to Santa's visit for months.

Apart from my caring duties, there was only one thing I had to do on the day: cook the dinner. And only one thing I wanted to do: watch Dr Who. Both went smoothly.

This is not parenting as I imagined it.  It's not in the parenting books, or even the books I've read about aspergers.  They are all about the need for boundaries, play, exercise, outings, friends: things my son is mostly ignoring.  According to the professionals, video games will make him anxious and angry and unable to sleep. Wrong.

He has spent whole days in his pyjamas, barely stirring from the sofa, while I try to hold my nerve and not worry that he will become an addict.  After all, children with aspergers do have obsessions don't they? And then I can't imagine anything worse than a day without dressing, I only do that if I'm really sick.

But he is as happy and calm as I have ever seen him.  He's been telling jokes and learning new magic tricks.  Interests and abilities that I haven't seen for a long time.

He visited a friend, his choice and he enjoyed it.

And this morning he spread the peanut butter on BOTH slices of toast.  He forgot he couldn't do it.  Perhaps rigid thinking is partly the result of anxiety too?  Perhaps if my boy is chilled he will be able to move forwards with bigger strides in 2013.

So many of my assumptions have to change.  For me a home is a place of refuge, where you (mostly) eat, sleep, and relax, a place to come back to, with real life lived in the big world outside, so much to see and do and experience.  But not it seems for my kids, for them home seems to be a place to live.  Finally I'm starting to embrace this new way of living, and to stop feeling so desperately stuck and trapped.

There was one glitch, but in the interests of "responsible parent blogging" and now that my son is older, I'm not going to give you the details.  It was a reaction, and we've both learned from it.

Still, even my son agrees that spending the rest of his life playing computer games is not an ideal ambition, so what next?  There is one approach that I haven't tried, despite the best efforts of the lovely Bright Side of Life, but a weekend discussion on Facebook convinced me, and an email was sent to the organisation that trains parents in RDI in Ireland.

Because I have to find a way to keep this good stuff going when the holidays end and school begins...

Favourite posts of 2012: theirs and mine

Once again my life has got in the way of blogging.  For a while there was nothing new to say, but I think that is changing, and half written posts are piling up, ready to be finished and inflicted on anyone who drops by.

But inspired by a number of other bloggers - with a special mention for Her Melness Speaks, The Squashed Bologna and Northern Mum - I've been sporadically collecting blog posts during the year.  Other people's blog posts.  Ones that moved me till I was in tears, or made me laugh till I cried, while others had me wanting to shout 'Yes, yes, yes' from the virtual rooftops.  Apologies if I've left your best post off the list, it's not deliberate, I probably just forgot to note it down...

So here they are:

A funny wonderful observant post about being British - something I vaguely remember - by a New Zealander


The most awesome rant of the year award goes to 'a special needs parent is'


No-one write about caring for elderly parents like Varda and this post will surely make you cry


One of several posts I saved from the fabulously funny Cate P.  This one about the menopause.


How many blogger can write an entertaining post about a carton of juice? Lizbeth can.


What do you say when a baby is born with Down's Syndrome? 


The definition of love, and it's not what you think.


On blogging: "Your blog does not have to heal the world. It need only heal your world."


The other side of autism, you won't read a more open and honest post than this

Lisa Maree Domican

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And just to throw in a few of my favourite posts from this blog..

Who doesn't love a birth story? Especially when it goes well.

Angel

The most joyous moment of 2012

Smiley walks again

My most personal post of the year, not sure that it was understood.  Let's just say that it's hard being a mum sometimes.

I wish I was a Stepford Wife

That's me done for now, so I've one last thing to say in case I don't post before January:

HAPPY NEW YEAR



Perhaps an aspergers Christmas will work


I'm going with the flow this year.  Christmas will be all about aspergers.

Perhaps everything he says is true.  Perhaps some everyday activities do frighten him.  Perhaps he is very tired and needs to lie on the sofa most of the time.  Or perhaps I'm just worn out and need an easy life.  The first 24 hours were a bit stressful, and since then I've decided that it's just not worth it.

I'm not going to impose lots of rules and regulations, I don't feel up to fighting.  If I let him be perhaps all will remain calm.  

Either way we're doing very little.  I plan to take my special girl out every day and do things at home to make her happy too.  Angel has a packed social calendar, so I don't need to worry about her being bored.  But she's around during the day to mind aspie boy if I want to take Smiley out.  So he can do his thing.

Christmas Dinner will be roast chicken for the adults, mash for Smiley and hot dogs for my boy.  And that's fine.  There will be a brief visit to see their dad and grandparents, and then it'll be home for the day, hot food, a hotter fire and the glow of the TV and all the other screens..

It's starting to feel a lot like Christmas: outside the street is quiet and some houses are dark, others are twinkling with lights.  Hibernation is setting in, families are coming together and shutting the door on the rest of the world.  Everything is slowing down.  My son is showing the way.  Perhaps if I don't fight it, he will tell me when he wants to go out, when he wants to be active, when he wants to join the world again.  Perhaps it will work.

I hope so.

And whatever kind of Christmas you're having, I hope it's a good one.

The End?

Well it could be.  You see my mood is not good, and I can't find anything much to blog about that is funny or novel or interesting.  My life is more settled than it was in 2009 when I began blogging, but I do a lot less, due to circumstances, so there is less material.

And yet again the main theme running around my head is my relationship with aspie boy, which is still pretty poor.  Today was to be a really good day: a family trip to the cinema to see The Hobbit, but I was in tears by 7.30 am and now my son says he may not go.  Luckily he likes the baby sitter I have booked to mind Smiley, so I will go with Angel if he decides to stay home.  Maybe it would be better if he does.

So it's the same stuff over and over, you've read it before and I've run out of ways to write it.  Some of the details have changed, but this post just goes round and round my head most days, it's the one time I didn't hold back, the one time I didn't censure before publishing:

I want my son back

There are other things bothering me too: my age, the loss of my Dad, the contempt for carers shown by the Irish Government and a good proportion of the Irish population.  I have some writing still to do:  the disability section above and Smiley's story needs to be brought up to date.  But I feel that I need to pull back from social media before I publish something I may regret.  And I need to put all my energy into repairing my relationship with my son.

I won't disappear completely, but in case I'm not around for a while...

Happy Christmas!

I want to get back to this...

Life caring for a severely disabled teenager

Yes I'm having a moan.  I'm hurt.  Once again the Irish Government has targeted the most vulnerable in the Budget.  Last year it was my daughter, this year it's me.  Okay so I'm not that vulnerable, but plenty of carers are, and hearing grown adults crying on national radio has really upset me today.

A 19% cut in the respite grant.

That's what has people in tears.

But for them too I don't think it's all about the money.  It's also about devaluing what we do as carers.  It's about what society really thinks about children, teenager and adults with disabilities and special needs.

It's like their needs are not so special after all.

My life is pretty good in ways, but let me give you a little glimpse into my world...

When you get the Sunday papers you use the Travel Section to light the fire.  You're not going to need it.

You're out and your child need the toilet/needs changing.  So you go home.  The disabled toilets are not big enough/do not have hoists.

You can't have a hangover, you can't be sick.  Mishandle her and you or she could get seriously hurt.  I am very good friends with my physiotherapist.

If you want to wash your hair you have to make sure that your child is not hungry or thirsty, that she's clean and dry, comfortable and has something to entertain her.  Then you can leave her alone for 10 minutes, but within earshot.

Wrestling your child into a full set of ski wear for a trip to town on a day in December.  It's the only way to keep her warm.  Lots of heat needed at home too.  Still feet get cold fast.

Feeding your child mashed up chips or chocolate cake, because she cannot chew and nothing else is available.  Of course you could have stayed at home, but she needs to go on outings with other kids.

You go to funerals and the cinema armed with an iPad, headphones, chocolate buttons and lots of drinks.  And even then you may need to leave half way through when she laughs at the wrong moment.

When people are nice to your daughter and you try not to imagine them as potential babysitters.  You're always looking out for potential babysitters, after all, you're going to need them forever.

Your whole life revolves around her needs...well it would if you didn't have other children too..

Sometimes the whole family needs a break.

Respite.  Carers need it.

#R2BC And don't mention the Budget

Well it seems that I just can't resist finding reasons to be cheerful...

Reasons to be Cheerful at Mummy from the Heart

So here are this week's reasons:

1. The Blind.

Rubber ducks at the ready!  No longer will my bathroom window look like this:



I have finally ordered a blind and will be able to celebrate Christmas with a bath :)  And before you wonder if THAT'S the reason I never seem to leave the house, I do actually have a shower downstairs..

2. The doorbell

After two years I finally have a functioning doorbell too!  This means fewer trips to the parcel office as I will hopefully not miss so many deliveries.  My door will no longer be battered by fists large and small as callers try to attract my attention.  Sometimes I am amazed that it hasn't fallen off the hinges.  And best of all, I won't have to keep the inner door open any more when I'm expecting callers, another reduction in the fuel bill I hope :)

3. The splinter

My son surprised me this evening.  Whether it's because he is a boy, or because he has aspergers (or should that be autism now?), cuts and bruises that are barely visible are usually major incidents.  Tonight was different.  I barely glanced up when he complained of something sharp.  Then I realised that it was in his foot, and he endured a good ten minutes of me digging around with a pair of tweezers.  It makes my eyes water just typing that, but he didn't even shed a tear.

4. The flowers

A surprise bunch of flowers is now brightening up my kitchen, dropped in by a neighbour whose house I watched while she was away last week.

5. The response

Sometimes you need to say thank you, even to the Irish Health Service.  I sent up a distress call on Tuesday this week, and by Wednesday lunch time I had received the help and support that I needed.

So who hasn't been affected by this recession?

It's Budget Day again in Ireland.

There's lots of talk again about who is going to 'take the pain'.  According to The Sun, it will be carers, children, the poor and the elderly.  No surprises there then.  And unless you live in a silent wordless world you must know how many people are angry and frightened, as well as cold and hungry.

But I think there are those who have taken very little pain at all, and some may have even benefited from the recession.  They are the people you see laden down with carrier bags on Dublin's premier shopping streets, who drive home in their luxury 12D cars.  They pack out the distressed property auctions and hoover up the bargains.  With cash.

They are responsible for a 40% increase in advance holiday bookings.

I wonder who are these people?

...young professionals in well-paid jobs, who live at home or rent?

...middle-aged people at the height of their careers with no mortgages?

...those elderly who are lucky enough to be on good pensions?

...millionaires?

...money lenders?

...cash for gold shop owners?

...financial insolvency consultants?

Should these people be taking the pain as well?

Oh no, say the pundits and politicians.  Ireland needs these people.  They are the backbone of the economy.  Tax them and they will leave.  Apparently there was an exodus of millionaires from Britain following the introduction of a 50p rate of tax for top earners.

Really?

Or is that just part of the picture.  Millionaires fall on hard times too, it's happened in Ireland.  Perhaps some of them would prefer to pay their taxes in case they ever need services and welfare, just like the rest of us.

Perhaps they're not all selfish, perhaps some of them care about the less fortunate and would like to help?  Perhaps they will want to help Ireland recover...

And anyway, if they did go, would their loss to the economy be any more significant than the hemorrhaging of Irish people that we have now?  The thousands of emigrants who leave every year.  Young people, old people, families, all are leaving, and hollowing out communities all over the country.   The loss of talent, the loss of spending, including social welfare cheques, can be seen in boarded up shops around the country and the despair on faces in the streets.

It seems that today's budget will just make a bad situation worse.

Aspergers and the jar of peanut butter


Peanut butter on toast is my son's current breakfast of choice.

He knows how he likes it too:

Two slices of white sliced bread from Lidl toasted on '2', taken out while still warm and spread with Panda Crunchy Peanut Butter.

I can make this in about 2 minutes.

But as a responsible Mammy I am trying to get my son to make his own breakfast.

Yesterday it was 11.05 before he FINALLY sat down to eat it.  And when I say 'sit', there was a fair bit of wandering around the kitchen involved too.

The breakfast-making began around 9am.  I get that his aspergers means he needs relaxation time and lots of it.  Currently this involves lying on the sofa with his laptop while wrapped in a duvet.  I pop in to remind him about breakfast at regular intervals, focusing on the health benefits and how it will improve his gaming skills...

I was delighted to see a loaf left on the counter at about 10.30 as it meant that he had actually got off the sofa, and put the bread in the toaster all by himself.  I praised him and went back to brushing Smiley's hair.

But he went back into the living room and forgot about his toast.

I saw it peeping over the top of the toaster and went back in again to remind him.

It was rejected as too cold.  I feared that a new start would be needed, but luckily he agreed to my idea to warm it up.

Next problem, removing the bread from the toaster.  Usually I get cries of "It's too hot, Mum!"

But being merely warm, this went okay too.

I directed him to get down the peanut butter to spread it on the toast.

"Oh no, I can't Mum, it look gross!"

It looks gross, but you want to eat it, son?

Mind does mental backflip.

"Why?" I ask.

"All those yellow scrapy bits on the side of the jar," he replies.

Other days he's complained about it being too 'liquidy'.

So no spreading practice today then.  And yes, he does need to practice.  Fine motor skills are still a problem.  His grip is not optimal, but the way that I do it is not 'comfy'.  So I'm working on other ways to help him.

But the boy has to eat!  So we'll do it all again tomorrow...