Sunday, July 27, 2014

When I don't sleep

It's 3am and I listen to Smiley chatting on the baby monitor.  Eventually I drag myself out of bed and go down to see if she needs something.  I change her position, her nappy, offer a drink and put on some music, go back to bed.  Hope she nods off.

She doesn't, and I ask myself if I should give her something to help her sleep, because if the don't the day will be ruined for her too.

Worry about whether Angel's attempt to dip dye her hair at home will work.  I guess I'll know in the morning.

Wonder how I will get through tomorrow if I don't get back to sleep.  Who will I shout at, which activity will get cancelled.  Who will be eating toast for dinner (clue: probably me).

Beat myself up for torturing myself by reading yet another thread on Facebook where saintly parents of autistic children write about the struggles of their children and how they never ever feel sorry for themselves.  Another page to 'unlike', I think!

Groggily remember writing about lack of sleep before and hope I'm saying something different this time.

What will I forget to do, how many more bruises will I gather as I blearily crash into things, will I manage all Smiley's care without leaving out something important or doing things in the wrong order.  Which means you often have to start over.

I worry about my ailments and resist the temptation to google them and vow to make another GP appointment this week instead.  Perhaps I am sick, perhaps a little stay in hospital would do me good.   No cooking or cleaning or childcare, just the chance to rest with other people taking care of you.  They might even give me sleeping tablets!  Don't know if it would be much fun without the internet hospitals even have broadband these days?

Start to think of all those health gurus who say that drinking wine affects your sleep.  Yeah it does.  It means I don't!

Treat myself to a Xanax.  It might stop my mind racing.

Then a Horlicks.  Sit and drink it in my slippers.  Feel like a cliché.

Try to work out if there is such a thing as a silent chore.  I did straighten my hair once in the middle of the night... Perhaps I could draft a few letters?  But probably tear them up when I look at them with fresh eyes.  In a few days.

Waste time on Facebook, Twitter, Instagram and Pinterest.  Apparently it's getting bright.  Peer out through the dusty windows.  Oh dear, they're right.  And Smiley is still awake.  Welcome to another day in special needs land...

What do you do when you don't sleep?

Thursday, July 24, 2014

Three firsts in one week

It's been a great week for Smiley, and she's given me lots of reasons to be cheerful...

A real jigsaw

She's always enjoyed pull out jigsaws, but not the part that involves putting the pieces back.  So I never thought to try her with a real jigsaw.  But her July Provision Tutor did.

(used with permission)
Smiley was entranced by it - helped by the glittery pieces - and so proud of her achievement when it was all complete.  And I was very proud too: even if she did need a fair bit of assistance!

A real sandwich

What do you do when you have a child who only eats soft food, but you're out, you're in a hurry and you can't see anywhere that serves mash potato?  Go to Marks & Spencer and order a sandwich selection of course!  I had no idea how it would go, but I knew she was hungry (we all were) and she took a bite without any hesitation.  Then she made a face.  Uh oh.  I was expecting food refusal on the next mouthful, but no!  She ate half the sandwich, crust as well, and totally deserved the blueberry muffin I was able to get for her an hour later...

Public Toilets

Once upon a time I just used the baby changing facilities like everyone else.  But Smiley is now a young woman.  And public toilets, not even disabled toilets, are designed with her needs in mind.

1. They are often so small that a full size wheelchair or buggy can barely fit through the door, let alone moved around inside.
2. There is usually nowhere to change an adult or large child except the floor.  Which is often dirty and wet.
3. There is no hoist to lift the disabled person back into their chair or buggy.
4. There is no thought given at all to those like my daughter who use the toilet, but are so floppy that they need a lot of help to get on and off.

In recent years I have mostly avoided public toilets by not being away from a home base for more than 4-5 hours at a time.

But this week I had no choice.  And between us, Smiley and I did it!  Once again it was thanks to a reasonably sized disabled toilet in M&S, and our Bug Buggy, which fully reclines, so I was able to sort her out afterwards too.  Result.

There is a campaign in the UK for fully accessible toilets and hopefully it will come to Ireland too one day. 

Reasons to be Cheerful

Wednesday, July 23, 2014

That bad thing I did for #wickedwednesday

My special needs 17 year old does not like the sunshine.  She was in hospital for so long that after she emerged blinking into the outside world at 6 months, she couldn't keep her eyes open in daylight for long.  But she loves going out!  And I can't always find a shady side of the street.  So from time to time we've tried to introduce sunglasses, and earlier this week her big sister Angel kindly tried her out with her favourite pair.  It was not a success....

Now to me this photo is really cute, but as my daughter is non-verbal, I'm not sure what she thinks, so perhaps I am being a wicked mum by sharing it?  But you know how much I love her, right?


Just click on the icon for more #wickedwednesday pics..

Friday, July 18, 2014

On dreading nights out...and looking forward to them

Oh I'm so confused.  In my party girl days, I never refused an invitation.  I would always be with friends, I was young, reasonably happy about my looks, lazy about grooming by today's standards, but no-one seemed to mind.  I just wanted to have fun.  Getting ready meant  a quick shower, some hair gel, deodorant, black eye liner plus a little short dress and high heels and 30 minutes later I was out the door.

That was then :)

It's not like that now.

I do still want to have fun.

But it's much more complicated.

Apart from a few trips to the cinema, I haven't been out since the Christmas party in December.

So I was thrilled to be included on a invitation list for an upcoming celebration.  I love my friends, I'd love to see them, yet as the event gets nearer, I'm so tempted to find an excuse and just stay at home with a couple of glasses of wine and another episode of Orphan Black.

I'd love to go out looking slim and fashionable and groomed, feeling confident, sociable and entertaining, with no curfew imposed by children who won't go to bed until I arrive home, and stories to tell that don't involve special needs and a crumbling home.  I'd love to believe that I will say the right things.  That I will be amusing, empathetic, interested in everyone, able to remember everything that has happened in their lives recently, the names of all their children and other significant people, but I'm afraid that I will just stand there awkwardly, clutching my glass of sparkling water and almost wishing for an emergency call to come home.

But if I stay home and stop trying to go out, it will be like giving up.  Accepting that the life that I anticipated is well and truly over.  I'm not ready to do that yet either.

And you know what?  Even though I don't feel like going out, I'm going to make myself do it.  And I'll have a great time too...

Anyone else feel like this?

Wednesday, July 16, 2014

It's all going horribly wrong

Six weeks to go until school starts again - and a whole new set of stresses - so we're about half way through the stupidly long summer break here in Ireland.  It all started well, but now I'd nearly sit and watch Jeremy Kyle all day over anything else.  At least I'd feel better about my parenting abilities.

Even the July Provision tutors are now being rejected by the children.  Yes even Smiley.  I think she doesn't want to do school type activities at home, so I spend the whole time trying to make it work, instead of using it to get things done.  Meantime the garden still looks hurricane-ravaged and there's a few more broken things around the house that may one day get fixed, but don't hold your breath.  Unless they're actually life threatening, they may just stay the way they are.  Perhaps if I leave them long enough the children might fix them for me?

I do have some major news:  it could mean a new start, and a little more confidence in my parenting abilities, but I've been advised not to write about it on here!   Even though I really really want to, and it might help other parents too.

So I have writer's block once again, as there's only thing on my mind.

I do keep writing.  It's just that I lose interest. There's 17 unfinished posts from the last month alone.

If I have a good day, I might actually finish one of them....

Saturday, July 12, 2014

Cooking with bored kids and stale cornflakes

Today is turning into one of those days when all my ideas for activities are getting the thumbs down.  Never one to avoid a challenge, I decided to see if I could fill up some time with a bag of rejected cornflakes.

Now don't say chocolate crispy cakes, because crispy and my special needs daughter do not go together!

I needed Google.  Which, as usual, came up with something useful: a recipe for No-Bake Chocolate, Peanut Butter, Corn Flake Bars.

With a little bit of tweaking, I was able to turn it into something that was fun to make and eat..

1. We crushed the cornflakes

2. I put some smooth peanut butter, honey and sugar in a pan.  Smiley held the handle...

3. Smiley took pan over to the stove so the ingredients could be melted together.

4. Back at the kitchen table, the crushed cornflakes were added, plus a little boiling water to soften them.

5. Then I spooned the mixture into little fairy cake cases and topped them with a little chocolate buttercream made with cocoa powder to stop them being sickly sweet!  Smiley certainly thought they looked tasty.

6. And the verdict?  A half hour well spent, I think...

Thursday, July 10, 2014

Little treats and other reasons to be cheerful

Here we go again!  Another round up of the good things that are going on this summer....

A busy house

Luckily I now have a working doorbell, because every day sees a stream of callers who are making the summer holidays a little easier.  From tutors - yep, I've got a lovely young tutor for Smiley too - to home helps, to actual friends of my children, it's been great.  While I have needed to step in and help the tutors from time to time, the house is starting to look a little cleaner, and I am getting a chance to breathe.

Little treats

I bet there are lots of children getting little treats to celebrate the summer.  Well this Mum needs a few too!  So this week I bought myself a cute pair of summer pyjamas and took Smiley for a walk along the seafront after an appointment yesterday.  The fresh air made my poor lungs feel sooooo much better.


Despite my reservations about their attitude to parents, I had reason to be grateful for their advice this week: I managed to follow it to the letter, and it prevented a bad situation from turning into a disaster.  There are some adults in the autism community who have been very supportive to me and other families with very helpful comments like this one that I'm reprinting in case you haven't seen it:

Reasons to be Cheerful