Saturday 30 March 2013

Happy Birthday to Boo!


It was Boo’s birthday earlier this week:  7 years of Boo on Planet Earth - in body if not in spirit!  She had a birthday party a couple of weeks ago, shared with Peeka, as their birthdays are about 4 weeks apart, and Boo only wanted to invite 3 friends.  ‘I only want my BFFs,’ she explained.  In the past I might have persuaded her to invite more people in the name of building social bridges, but I’ve come to feel that this has to work both ways in order to work at all, and Boo doesn’t get very many invitations.  So 3 BFFs it was, plus Peeka’s all-female band of beauties.  The girls enjoyed their party: Peeka made the most of her moment in the limelight and Boo just loved seeing her friends out of school, which happens rarely.  During Boo’s birthday song, as they brought in her cake with its 7 candles aflame, she let out a really loud and mischievous laugh, and when we had all finished singing, she shouted out, ‘I’m going to blow out them NOW!’  Those darn candles were tricky little things, and BFF#1 started blowing too, to help Boo get the job done.  Boo added, for clarification, ‘with a little support from [BFF]!’ which made us all chuckle.  What 7 year old uses the word ‘support’?!

On the day of her actual birthday, Boo was happy from the moment she woke up.  Days like these are so precious.  It’s not just because she is easier to manage when she’s in a good mood, though she really is, and the break from our daily battles and frustrations was, admittedly, most welcome!  No, the best thing about a happy Boo, for me, is the very knowing that she’s happy.  I spent most of Boo’s early years wondering what she was thinking, how she was feeling.  She was an enigma.  The extreme moods I could figure out, but unless she was very happy or very unhappy, I didn’t really know how to read her.  Now that she’s 7, I am beginning to get better at working out how she might be feeling, but she can still be a bit of a mystery to me and I get it wrong pretty often!

On her birthday, Boo was definitely happy.   I keep thinking about her birthday face and it makes me go all gooey-hearted.  She just couldn’t hide her delight.  She had no clue what her presents would be, because as much as I had tried to coax out of her what she would like, she gave me no inkling what to buy.  She had been asking repeatedly for a ‘Moshi Membership’ since her last one had run out about 3 weeks ago, and Grandad had volunteered to step in and make that happen, but nothing else had even been mentioned.  I’d just had to guess, and thankfully I guessed right.


At bedtime, the night before Boo’s birthday, she seemed pre-occupied, restless. This week at school, one of her classmates had tripped over another pupil and broken his arm, and Boo had been really shaken up by the sight of paramedics with stretchers and ‘medical stuff’ tending to him.  The whole class had obviously been really upset and concerned for their friend, and Boo’s support assistant reported that Boo had been particularly distressed by the incident.  I guessed that this was what was on her mind.  I snuggled up in bed with her and asked, ‘Y’ok Boo?’  No answer.  I thought I’d try to redirect her attention.  ‘Are you looking forward to being 7, Boo?’

‘Huuuuuuh,’ came her unhappy groan in reply; a pained, anxious expression on her face.  Her eyes began to fill up with tears. 

‘Are you worried about something?’ I asked, tentatively, because usually when Boo is upset, the last thing she wants to do is talk to me about it, and me asking about it is often met with angry shouting through gnashing teeth.  After a long pause, she turned to me, wide-eyed and fragile.

‘I’m worried that I won’t like my presents,’ wailed Boo.  At that moment, I got it.  We had been banging on about her birthday all week (her sisters for a lot longer than that!) because we were excited for her, but what we had actually done was put pressure on her, we’d made it too big of a deal.  She was anxious.  And, those birthday packages could contain anything!

‘Don’t worry Boo,’ I said, stroking her forehead.  If you don’t like your presents you don’t have to keep them.  You can swap them for something you do like.  She looked relieved, smiled at me and said,

‘You can go away now.’ 

So I did.

 The next morning, 6.20am came, and in lolloped Boo, quietly squeaking, ‘It’s my birthday…are those my presents?!’  She got straight to work, flanked by her inquisitive sisters, who were impatiently nudging her to get on with opening the next, and the next.  I love the way Boo opens presents.  She tears into the wrapping paper urgently then takes a few seconds to examine the contents.  She isn’t bothered by the social graces of gift-acceptance; if she doesn’t like it, she just sets it aside and moves on.  If she does like it, then time stands still, we must p-a-u-s-e.  She takes her time to study all the intricacies of the given thing, turning it over in her hands slowly, reading everything printed on the packaging.  If it’s a book, then she sets about reading it, there and then.  This makes her sisters very twitchy- they are too eager to see what else hides in pretty paper and get ripping!  Boo takes her own sweet time.  So, with this in mind, I saved about half Boo’s presents for her to open after school – we have enough trouble getting there on time as it is!  The big hit of the morning gift-opening session was a ‘My Little Pony’ Wedding Castle (they have boy-ponies now, you know!) complete with bride and groom.  She loved it so much that bride and groom had to accompany Boo to school, to be shown and told.


I knew that the fat envelope containing Grandad’s card and the longed-for Moshi Membership had to stay hidden until the end of the day, when all the gifts had been opened, the birthday tea eaten, the candles blown out and the cake shared.  There was no way we’d get through any of those traditions if Boo got her hands on that envelope – she would be glued to the computer and parting her from it would be messy.  In fact, to avoid the messiness, I had decided to keep quiet about it until the next morning, but then I cracked.  She asked and asked and I hated to see her disappointed puppy-face, so I told her that Grandad had sent the very thing she wanted, and she could play on her computer game first thing in the morning.  But Boo had to see it for herself.  I brought the card up for her to open and she was over the moon.  We talked about our rules for waking up (stay in your own bed except if you need the toilet, try to go back to sleep if it’s before 6am, if you can’t sleep you can read, no DS or other gadgets before 6am, no computer before 6am) and said goodnight.

That night was a rough night, with Peeka, mainly.  All the girls have had snotty colds and coughs this week – Pips had had the day off school after being up most of the previous night with a high temperature and a persistent bark.  So there were various gettings-up to sprinkle Olbas oil on pillows, blow noses, administer medicine and refill bottles of water.  Peeka woke us up with her thoroughly miserable crying a couple of times so Mr BooHoo had gone to her and fallen asleep next to her in her single bed (oof).  He woke up in agony, welded to the sharp edge of the bed-frame, at about 3am, and was shuffling back to our room when he saw that Boo’s light was on.  


He peeped around her door and found… no Boo.  Her new 250 piece jigsaw puzzle had been opened and completed -it was displayed proudly in the centre of her bedroom floor- but Boo herself was nowhere to be seen.  Then he heard music from downstairs, and upon investigation, he found Boo, sat at the computer, playing Moshi flippin’ Monsters.  He turned it off and frogmarched Boo back up the stairs.  This was when I woke up.  What a racket.  Boo was not even slightly amused that her fun had been so abruptly curtailed and the two of them were having a very loud argument about it.  It took me half an hour to talk her down from possibly the angriest I have ever seen her, to a point where she could be calmly unhappy.  I lay next to her and rubbed her tummy until she stopped crying.  I woke up about an hour and a half later, aching all over from lying right on the edge of the bed with Boo’s feet on my legs, and staggered stiffly back to my own bed.   

We managed to lie in until 8.30 after all the comings and goings in the night – for a change, the kids were as exhausted as we were!   Boo struggled to wake up, having missed so much sleep, but when kisses and sunshine streaming in through her window failed to rouse her, all I had to do was whisper in her ear, ‘If you get up now and have some breakfast, you can play on the computer afterwards,’ and she was out of bed like a shot! 

Funny Boo. 

Sunday 24 March 2013

Melatonin and Monobrows


 Ah, bedtime!
  
Clean, freshly bathed children,
Tummies full of warm milk,  
Quiet-calm snuggle stories,
Low moon-glow, soft music,
Fluffy blankets tucked under chins.


Kisses on foreheads,
Blankies to lips.
Thumbs in, lids drooping,
Limbs heavy, falling in.

She’s going now, gently drifting
Angel breaths, sleep-sighing,
A dream’s whisper,

Finally… a-s-l-e-e-p.



‘MUMMY, WAKE UP!  YOU’RE SNORING.’
 Oh Crap.  Yes, come bedtime in this household, the only one likely to fall asleep as soon as their head hits the pillow, is me.   But not for long.  As I’ve written about in previous posts, bedtime is not straightforward in our family (or, I suspect, in many families living with Autism.)  None of my girls are great sleepers, but we are working on it, and making a little progress.

Originally, when Boo’s fabulous paediatrician asked us if we’d like to try giving Boo some supplementary melatonin to help her to fall asleep, we balked at the idea.  It just felt plain wrong.  I think lots of parents would feel as we did initially – the thought of ‘drugging up’ our child so she would sleep just made us feel uneasy. And then there was always that niggle… that if were ‘good enough’ parents, then we should be able to fix this, on our own.  So we declined.

But six more months of not eating an evening meal together (or spending ANY adults only time together, actually) began to wear us down.  Six more months of running up and down the stairs to deal with whatever mess Boo had got herself into- spilt water, blankie-out-the-window, PJs off and un-put-back-on-able, or (gag) the dreaded poo-paintings- all of it just broke us, and on the next visit to the paediatrician, we said, ‘Tell us more about this melatonin.’

Melatonin is a naturally occurring hormone which is produced by the body to cause drowsiness.  Many people with Autism have low levels of melatonin which may partly explain why they are more prone to sleep problems.  The body’s own melatonin production can be supplemented by using two types of medicinal melatonin:  short-acting  (to aid the onset of sleep), and long-acting (to maintain/prolong sleep).  Dr. J. began by prescribing the smallest possible dose of short-acting melatonin, to help Boo to fall asleep.  When we asked if there were any problems or side effects to look out for, she told us that the most common problem with melatonin is that it doesn’t always work.  (It is common for some children with Autism to receive the maximum dose and still not be able to sleep.)  That first time, having guzzled down her bedtime milk (with the contents of the tiny melatonin capsule sprinkled and stirred in), I was pretty taken aback when Boo’s eyes began to get droopy about 20 minutes later.  She actually asked to go to bed, and was out like a light.  We got her sisters in bed and, without the usual fuss and bother coming from Boo’s room, they found it easier to fall asleep too.  Mr BooHoo and I had eaten our evening meal by 8.30, totally undisturbed, and didn’t know what to do with ourselves!  ‘So this is what the evening feels like for everyone else!’ he remarked.  I think we even got through a whole movie, feeling very decadent.

For a while, all was well at bedtime and overnight, but after a few weeks we began to notice that Boo was finding it more and more difficult to fall asleep.  Had her body become desensitised to the sleepy stuff?  Dr. T. prescribed an increased dose, just 1mg more of melatonin.  This did the trick, and peace was restored again.  But a few months later, Boo began to wake up too early and was soon rising before 4am on a daily basis.  At our next visit to the paediatrician, she prescribed a small dose of long-acting melatonin, a slow-release form which would help to keep Boo asleep for longer.  Again, this worked a treat, but only for a few weeks!  Today, we are still trying to get the balance right; we regularly need to ask the paediatrician to tweak the doses of the two types of melatonin, in order to help Boo fall asleep and stay asleep using the smallest dose necessary for her.    

We really notice a difference in Boo’s behaviour when she hasn’t slept well.  Her concentration is nowhere near as good; her attention tends to wander or become fixed on something random.  She’s elsewhere, not with us at all.  Trying to get Boo to do anything (such as put on coat and shoes for school) when she is in this frame of mind is like trying to guide a large goat through a maze.  Conversation is impossible- she won’t listen (yet I’m sure she hears), she doesn’t answer; there is no persuading or reasoning with her.  It’s as if Boo just ‘shuts down’ this whole section of herself, to conserve energy.  And then sometimes, she is very capable of communicating, but seems stressed, unable to cope.  She becomes upset or angry much more quickly, is less likely to co-operate -and she can be VERY stubborn.  At home she can be quite aggressive towards us and lashes out, out of desperation – it all just gets too much for her.  We make sure we let school know if Boo has had a bad night, because although she is generally fine at school in the morning after very little sleep, her teachers report that her mood, behaviour and concentration deteriorate noticeably in the afternoon.

At the moment we are going through a bad patch, sleepwise – Boo is waking early again (around 4am most mornings) but also struggling to fall asleep at bedtime.  Now that she’s older, rather than nappy-antics (thank goodness!) she likes to read, sing, play or draw.  Singing and playing at bedtime are not allowed because she keeps her sisters awake, but if she’s reading or drawing, we tend to let her continue until she decides she’s tired.  If she‘s not disturbing anyone, we can go downstairs and eat.  The other night, an good hour after finishing our steak and chips, we heard a blood curdling cry from Boo’s room.  

‘HELP!  HELP ME PLEEEEEEASE!’

I dashed upstairs to find Boo in tears, looking frightened.  I slid into bed beside her and wrapped her up in my arms.

‘What’s wrong, Boo?’

‘I’ve got fur on my face and it won’t come off!’ she wailed.   

She was scratching furiously at the space between her eyebrows.  (Well - to be fair, in our family we are not blessed with much of a space there!)  I wanted to laugh but she looked so forlorn that I could only hug her, and explain;

‘Oh that’s ok, Boo – it’s not fur, it’s just part of your eyebrows and it’s supposed to be there.’ 

 She turned on her bedside light and peered at my face, stroking my tidy eyebrows and prodding the bare space in between (courtesy of Vanessa at Fine Fettle Beauty who had whipped off my ‘fur’ a couple of days before!)



‘You haven’t got fur there,’ Boo remarked.  


‘No, Vanessa takes my eyebrow fur off for me at her salon,’ I replied.

‘Will she take mine off for me?’

‘Maybe one day, when you’re grown up.  Kids are supposed to have eyebrow fur but sometimes grown up ladies take it off to make their faces look tidier.’  Boo looked satisfied with that, turned off her light, rolled over and put her thumb in.  I said 'night night’, kissed her forehead, and left.

At 4.30 the next morning, I shuffled blearily into her room to give her her DS, as she had begun to sing and play noisily and I wanted to give her a quiet activity to do.  I noticed dry blood on her pillow and on her fingers, forehead and nose.   ‘What happened here?’ I asked her, although I knew as soon as I saw it.  She had scratched away all the skin just above the bridge of her nose.  

‘I didn’t want fur,’ she whispered, and added, ‘it was untidy.’

Boo's Autism prevented her from realising that the consequence of removing her brow ‘fur’ would be a sore-looking red scab in the middle of her face, which was far more unsightly than a little bit of cute monobrow fluff.  Thankfully, it healed well and she just has a little scar there now.  It’s a worry, though.  When a nearly-seven year old is prepared to bleed for the sake of facial tidiness, that’s a problem.  But it’s a problem that probably wouldn’t have happened if Boo had been asleep that night, instead of wide awake with her mind turning overTime to email Dr.J. again.  We will get this right, one of these days.  And hopefully before Boo discovers what some grown up ladies do about leg fur.  Or worse :-0

Thursday 14 March 2013

WORLD AUTISM AWARENESS DAY 2013

...and how to do your bit without breaking a sweat!



World Autism Awareness Day (WAAD) 2013 is almost here (2nd April, yay!) and it’s great to see that  the global online Autism community have ramped up their efforts to spread the word and help to raise awareness.  I have been particularly excited by the 'Light it up Blue' campaign for the charity Autism Speaks in the USA and beyond, which has famously led to some of the world’s most beloved landmarks being bathed in blue light to mark WAAD in spectacular form.


This being my first WAAD as an ‘Autism awareness raiser’, I was all fired up to join in the excitement,  so I got my blue lightbulb ready for the front room :-) and then set about learning more and looking for events to take part in here in the UK.   The National Autistic Society was my first stop.   

Autism Politics for beginners


The first thing I learned was that the National Autistic Society are not related to Autism Speaks and the Light it up Blue campaign.  The UK affiliate of Autism Speaks is called AutisticaI discovered that Autism Speaks and Autistica's main aims were based in scientific research around Autism, while the NAS approach to Autism is more person/family centered.   
I understand that Autism Speaks is researching the causes, prevention, and treatment of Autism.  I’ve also come across the word ‘cure’ in this context.  This upsets and insults a lot of people in the Autism community, including many adults with Autism who do not want Autism to be viewed as a disease, a fault or a flaw; something to be prevented or eliminated.  I myself can become quite touchy about the term ‘disorder’ in my daughter’s diagnosis of ASD, which implies that those with the condition have something wrong with them.  No.  My Boo is not wrong, she is different.   I am a member of the ‘Different, not less’ club.  I am offended by suggestions that my daughter and those like her are somehow not as good as so-called ‘normal’ people.  It is just plain reductionist.  I don’t even like the term ‘disabled’, for the same reasons.  I prefer ‘differently-abled’, but at this point I know I am losing some of you- you are looking at me sideways and silently calling me a fruit-loop.  That’s fine.  I’m not here to dictate how anyone else should think.  I am not an ABA mum, a Son-Rise mum, or a Warrior mum, withholding vaccines and banning wheat and dairy… but I fully respect those of you who are.  We are all doing what we believe serves the best interests of our children.  

 I happen to align myself more with the NAS way of thinking, but it has to be said, the NAS do not seem to be so excited about World Autism Awareness Day and as such, I think they may be missing a trick. The 'Light it up Blue' campaign has glued itself to WAAD, as has the 'Go Blue for Autism' campaign in Australia and this has gained everyone's attention.  This, in my opinion, is the way to get the ball rolling in the UK, if we want perception of Autism to change.  I really think the NAS should get on board with BLUE and add their own slant to it.  The fact is, regardless of which side of the fence you sit on, the whole BLUENESS idea works, because it’s easy, the hard work has already been done, it’s FUN, and deserves to be as huge here in the UK as it is in the USA and Australia.

A few thoughts for those who are a little green at going blue...

If you are a certain sort of person, and you click on NAS or Autistica's fundraising pages, you will be excited.  When I clicked on Autistica's fundraising page, the words ‘marathon’ and ‘Kilimanjaro’ punched me in the face, so I quickly unclicked.  In my search for more realistic ways to take part, I only found a handful of community events planned for WAAD in the UK, and nothing close to where I live.  Hats off to anyone who is going to organise their own fundraiser, but that's not me (at least, not this year!)  In any case, as much as I realise that money makes the world go around, and that there are countless causes supporting people with Autism in need of money, I personally feel that the important work lies in raising awareness and acceptance of Autism - once we get that sussed, the money will follow and hopefully go where it needs to go.

So, in addition to the Empire State Building and the Sydney Opera House, the London Eye will be lighting it up blue this year for WAAD, as will Birmingham University.  And my front room.  ;-)  I would love to hear about any other venues, iconic or otherwise, going blue for Autism awareness this year!  Members of the Autism community - come on, just do it.  It’s such an easy thing to do: look- I’ve even given you a link to buy your blue bulbs here.

... and, if you want to sprinkle a little sugar on it, buy online via The Giving Machine and you can donate a few pence to your chosen charity or cause at the same time, at no extra cost to you.

I know, putting a blue light on in your front room may seem silly, trivial and a little pointless.  It is not a very grand gesture.  It is not a marathon or a trek up Kilimanjaro.  It’s not even a fete or a bun sale. But sometimes, lots of people doing something tiny can add up to something big.  Autism AWARENESS is what WAAD is about, so let’s raise awareness, one person, one lightbulb, one conversation at a time. Looking for other ideas to mark the occasion?  There are a few suggestions on the Autism Speaks and Autistica websites.

The simplest ideas are often the most effective.  If you design or borrow an Autism Awareness Facebook cover picture for the day (or the whole of April, Autism Awareness month), then how many people will see it?  LOADS!  Or have a look at one of the thousands of Autism related Facebook pages, blogs or Twitter feeds.  Like and share a page, subscribe to a blog, retweet!  Easy-peasy.  


My favourite idea is to wear blue to work (or wherever else you might be going!)  because for me it necessitates buying something new, which is always good.  ‘Go shopping for Autism’ – sounds fab doesn’t it?!  If I can’t find anything blue in my size then I’ll paint my nails blue instead and wear blue eyeshadow:  ‘The Autism Makeover’-are you in?!   If we can do something that prompts one thought about Autism, which otherwise may not have occurred, then we will have done something wonderful.  We will have paid forward our awareness and acceptance of Autism.  With any luck, it could lead to a conversation about Autism, which may just reach someone who can learn something new from it, and that awareness and acceptance could ripple outwards from us, to them, and travel who knows how far?

Please, if your life has been touched by Autism, GO BLUE for Autism on World Autism Awareness Day in whatever small way you can; encourage others to do the same and help raise awareness and acceptance of Autism.  Feel the love and pass it on!  Tuesday 2nd April.