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 over. Time 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
