Something special happened today

Funny how life goes: just when you think that you're sinking into another black hole, your kids drag you back out again.  Today began with a very successful trip to Tallaght Hospital.  We've never been there before, so that means that the patient had no bad memories of the place, and persuading him to go was not too difficult.   I'd rung ahead and explained about the special needs involved, and we arrived at the requested time: 8.30 am.  We only had to wait for 5 minutes, and the medical staff were lovely to all of us.  Now that's impressive, especially as the media would have us believe that the whole Irish Health service is a complete disaster area, to be avoided at all costs.

Then this happened at lunch time.  I've never given up on Smiley, she must be on the longest toilet training programme ever (14 years and counting).  And I'm also always trying to improve her everyday skills, and her determination is just as impressive!  Today she took me completely by surprise by plotting, then eating, the last bit of her dinner.  Up to now self-feeding has been almost entirely confined to things made of chocolate...

Eyeing up the last of the dinner
This is hard work!
Aren't I amazing?
Finally I have to mention that after a sleepless night, I had a lovely day on Sunday.  Ironically this was thanks to my concerns about Jazzygal, who injured herself doing Pilates and it sounded quite serious (and if this has happened to you, she'd love to know about it, so please pop over to hers if you have a story to tell).  So with nothing better to do, I decided that myself and Smiley could shop and make a little hamper to cheer her up.  The sun was shining, the roads were empty, so I decided to that we may as well deliver it by hand, and so we found ourselves as half past four on a sultry Sunday afternoon drinking coffee and scoffing biscuits with Jazzy and her lovely family.  One of the best days of the summer so far...

I'm linking this up with this week's Reasons to be Cheerful, currently hosted by Lakes Single Mum.


Reasons to be Cheerful


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 though...do 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?


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


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?

brummymummyof2

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


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?




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....



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...






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.



Autistics


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


Faking it

It's a new thing for me.

I'm faking it as a parent.  Okay, so in a way I'm done it before.  Pretended I was a real Mum after Angel was born, when I hadn't a clue.  Trying to be a special needs parent after Smiley was born and floundering.  Then thinking I was an autism parent, and doing it all wrong.

I'm trying to change things now.  I'm trying to fake it as the autism parent that I want to be.  I'm not feeling it you see. But I'm stuck.  I've no choice.  Scrub that, of course I have choices, but most of them don't look very positive.  I'd be worried about the outcomes for all of us.

The problem is that faking it does not sit well with me.  I've always tried to be honest with my children - with a few exceptions, such as Santa.  I answered their questions as truthfully as I could, giving them age appropriate answers, and as much - or as little - information as I thought they needed. Even when feelings and opinions were involved ... If they asked me whether I liked something, I might say "no".  But I'd also tell them that it was okay for us to like different things.  I'd always assumed that was healthy.

Yet I've heard parents give completely false reasons and explanations for things to their children.  I would wonder why, and how they remembered all the untruths that they told.  But perhaps they were wiser than I realised at the time.

It seems that sometimes children don't want the truth.  They want to hear what they want to hear, and nothing else will do.  If you give the right answer it can provide reassurance and boost their security and self confidence.  Well so long as you don't get found out anyway.  It all sounds good from their side, but will it work from mine?  My biggest fear is that faking it will fake closeness but eventually create distance in my head.

So faking it is hard, especially for someone who hates to lie in word or deed.  But perhaps its the only way.  If I keep going through the motions perhaps I'll eventually believe what I'm doing and what I'm saying.  Then it will be the truth, a good truth, and I won't be faking it any more.  Fake it till you make it, isn't that what they say?



Note: I wrote this in the middle of the night, but it still makes sense this morning, so I've pressed publish.


So, laser eye surgery, yes or no?

I tend to say I'm blind, which is obviously not true at all, and must annoy people who really are in that position.  But I have been very short-sighted (-6ish) for a very long time, and now I'm getting long sighted as well. Which is kind of focusing my attention on what I can and can't see.  Sometimes I just shrug my shoulders and think of it as another side-effect of being the wrong side of 50.  But I'm not dead yet, nor falling apart, so maybe I should do something about my eyes?

When I was young I resisted wearing glasses completely, except for looking at the blackboard, and later, driving the car.  Contact lenses changed all that, but I was very careless with them, and on my third pregnancy my eyes rebelled, and my optician told me I'd have to stop wearing them except for special occasions.  And that's exactly what I have been doing for the past 13 years.  I'm almost used to wearing glasses full-time now, but I still have a love-hate relationship with them.  They're great to hide behind, but I always try and whip them off if a camera is pointing at me! Vain?  Obviously I must be.  But it's not just me: even my Dad got a tooth implant in his late 70s.

So what are my options?

1. Permanent contact lenses


Apparently these are supposed be a safer option than laser eye surgery .... which I thought was completely safe!  But since it was contact lenses that gave me problems, I don't think that this is the solution for me.

2. Keep wearing the specs


They're not that bad, but they're annoying in the rain, and the heat, and I feel old and unattractive when I wear them.  They're also expensive - I never seem to be able to find any cheap frames that I like, and then I cannot bring myself to sport the milk bottle look either, so I pay for specially thinned lenses.  Luckily I don't lose them, but still.  The thought of spending my 80s - if I get there - searching around for my lost specs again does not fill me with joy, so perhaps I should try something else?

3. Laser eye surgery


Tell me I'm not the only person who always thinks of this scene every time someone mentions lasers:


So laser eye surgery was always going to be a hard sell as far as I'm concerned!

Yet as time goes by, more and more of my friends are getting this surgery done, and all of them have had a good experience.  So why not me too?  Especially as that long overdue cheque has arrived and I don't plan to spend every cent on the kids.  Apart from being totally terrified, I'm also worried that laser surgery won't solve all my eye problems, especially my developing long sight.  I have visions of not being able to shave my legs or put on mascara without poking my eyes out!  But this week I was told that I was wrong about that too...so what do you think, should I go for it?

There is one other option you see...

4. Going naked


With my eyes that is.  It came to me the other day when I was having a quick coffee with friends.  They had pushed their sunglasses into their hair, and I suddenly wondered what would happen if I did the same.  At first everything looked quite blurred, but gradually my eyes adjusted until my friends were just in soft focus, and I could still hear everything they were saying.  Yes I do 'hear' with my eyes as well as my ears.  Just me?  I don't believe you.

I did it again this morning.  Headed off for a run during rush hour, without my glasses.  Since it was a soft day I did not miss the drops of rain on the lenses that would be normally be blurring my vision.  I did not get run over either, and I was even able to count the seven "No to Garth Brooks" posters on Clonliffe Road, that seem to be the total sum of the high profile protest against the five planned concerts at nearby Croke Park.



Going naked is cheap and not scary, and until this week it was my preferred option.  But now I'm wavering.

There's one more worry too.  I wonder if getting laser eye surgery would be tempting fate, as my Dad was diagnosed with cancer shortly after getting his tooth done.

What do you think?  I'd love some more opinions.



Dead Triffids and other reasons to be cheerful

There's a plant theme to my reasons to be cheerful for this week...

Flowers


I don't have much time for gardening, which can lead to unexpected problems (see below), so I take great pride in my little collection of pots outside the front door, and this year, they are blooming beautifully!

Help and Support


Myself and Smiley enjoyed a wonderful day out on Sunday, and it was only afterwards that I realised why it was so special: for once I didn't have to worry about logistics, I didn't have to worry about what was going to happen next and how I would manage it with a wheelchair.  There was somebody with me all the time, organising everything.  It was almost like having parents again: someone else taking all the responsibility, just for a few hours.

July Provision


If you're not in Ireland, July Provision won't mean much to you - but it means a lot to special needs families, though we're a bit late to the party...  You see we have humongously long summer holidays here: three months at secondary level, which is a crazy amount of time to fill, especially if you can't go on holidays and your teen won't go to summer camp.  And these days they're not allowed to work either!

My two special needs teens used to have school-based summer camps, but those have been cut, bar one week at Smiley's school.  Instead families can apply for home-based tutors for 10 hours a week.  And this is what we have done here, and it all began yesterday.  Some boundaries were set, but apart from that, it went quite well.  Keeping all my fingers and toes crossed for the next four weeks...

Dead Triffids


Okay so they're not actually triffids, but I had no idea how wild my garden had got until some pruning by my neighbours followed by a night of heavy rain caused half my back garden to collapse!



And the reason to be cheerful?  Friends - and children - who are rallying around to help me to clear up the mess: it's much easier than doing it alone.


Reasons to be Cheerful