Insomnia.. I can’t get no sleep

The ‘Faithless’ hit from the 90’s, the theme tune to my youth, made me jump up and down and dance like crazy.. Is now a reality..

I wonder what my twenty something self would say to me now..

When son No. 1 stopped sleeping, as I’ve previously talked about.. we thought it was a phase.. we thought he was being difficult.. naughty.

I gets no sleep

I can’t get no sleep

I can’t get no sleep

I can’t get no sleep

I need to sleep, I can’t get no sleep

I need to sleep, I can’t get no sleep

Insomnia by Faithless C1995

When son No. 1 stopped sleeping, as I’ve previously talked about.. we thought it was a phase.. we thought he was being difficult.. naughty..

After his diagnosis, we were surprised to find out insomnia or disturbed sleep was common in children with Autism.  We were advised to put in place a consistent bed time routine and come back after six months, if it was still an issue.
Seven months plus later, and the eye bags were noticeable on both of us. The desperation was palpable, the sleep issue was affecting everything.

Work was a challenge for both the Daddy and I, we found ourselves sleep walking through life.

Often we ended up falling asleep with son no.1 in his cramped bunk bed or lying on the carpeted floor next to him.

On the days when we’d really given up, we let him sleep in our bed.

If we wanted him to stay upstairs and rest.. not even sleep, then we had to stay with him.  Soothing, stroking, tickling his feet and his back.

Throughout Son. 2 was a dream sleeper – still is to a certain extent.

The Daddy worked shifts, and on his late shift I was alone with the task of pacifying, pleading, calming and absolutely pulling my hair out at my inability to get son no. 1 to sleep.

I really felt that I had failed in my ability to parent. In the age of the ‘Super Nanny’, I allowed my five year old to be in charge.  How silly of me to let him sleep in my bed.. How stupid to allow his lack of sleep to dictate my evening meal time. It was clearly down to my bad parenting.

My mealtimes became later and later, once son no. 1 finally closed his eyes, I was able to eat my evening meal sometimes at 10pm if I was lucky or on the evenings it was pushing midnight there was no point.

Those evenings, where not an episode of Eastenders or the latest police drama were watched – were hard. There was no me time. There was no work time. There was no energy.

On the evenings where the Daddy was at home, and on an early shift, he would often take control of bedtimes.  Still the meals were late, but at least I was able to cook whilst he lay upstairs tickling feet.

If I was meant to work on a report or catch up on the hundreds of work emails received daily, I struggled.

Sleep deprivation is an instrument of torture. Throw in two children, two dogs, a challenging job and running a family home and you’ve got the perfect recipe for depression, anxiety, fatigue, stress.

And still we battled on, until the tiredness and the depression took over.

Tiredness = Depression = Tiredness 

Marking time on the calendar, I made the call to the consultant’s secretary.  This is where we are at, it has been six months.  We have a routine (of sorts), I am unfit to work, I am sleep deprived… we all are… please help.

Eventually after some calls back and forth we were granted an appointment, another month down the line.  This time with our consultant’s registrar.

Picking through the notes and questioning me on my children’s bedtime routine, it became evident to the Doctor that help was needed.


And so we were prescribed Melatonin, not licenced for children in England, our health authority could only prescribe it via a consultant. And so repeat prescriptions were only given after a visit to the hospital.

NHS and Insomnia

Beautiful and asleep x


The initial effects of the drug were so effective I would of hopped, skipped and jumped through any hoop, to make sure we had enough!

Then it was time to move, another County, another health authority and another set of hoops..

Useful Links:

The National Autistic Society

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The Bells

The Autism Mummy must plan, must prepare and must think ahead at all times.. And as much as I can plan, and can prepare and do think ahead.. I want my children to have the spontaneity of childhood, the freedom to try new things and the excitement of a surprise.

So sometimes I just take a chance, a whim, I am spontaneous, and sometimes it is wonderful and full of the joy of childhood..  And sometimes it’s a complete and utter bloody disaster.

And so it had been one of those mardy, miserable days where the children didn’t want to go or do anything and the weather matched their moods.  To be fair I wasn’t much better.  The Daddy was working and going onto play football and so our Saturday pretty much sucked.

Apart from catching up on the housework and drinking copious amounts of tea with my lovely Mum, nothing much was happening.  But as the mardyness of the day continued, and the boys began to run around the house and fight each other – enough was enough.

“Right we’re going out” – I announced to my miniature audience.  No amount of questions and whining would cajole me into revealing our destination.  And so packed up in the car we drove the short distance to Ottery St.Mary Church.

On arriving I announced that we were going up the clock tower!  The boys were  excited, the nanny not so.. Oops I had forgotten the Nana’s fear of heights..

And so with the usual words of warning, along with a few threats before leaving the car, we made our way up the ancient steps and into the magnificent church at Ottery St. Mary.

Son No.1 went ahead, followed by me, son No. 2 and the Nana.  50 ancient spiral steps, in a confined space – this surely couldn’t go wrong..

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And so at the top of the steps we entered the clock tower; a dusty old room with beautiful oak beams and the mechanism of the church clock and a massive trapdoor to lower the bells from up above.  The boys were fascinated and asked questions ten to the dozen, my heart swelled with pride and I was so chuffed I’d decided to be spontaneous!  Next we were asked if we would like to go across to the other tower.

 

 

 

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Across wobbly planks we all trod a tightrope walk across the vaulted ceilings of the church, I tried  not to think too much about the age of the building and my own unfounded fears of falling through to the church below.

The boys loved the adventure and the sight of seeing the unseen.  This was a success!.. The Nana gritted her teeth and to her credit trooped on (she revealed later she was being brave for her grandsons).

And so with a wobbly turn around, we trooped back into the clock tower, before making our way up the next set of tight windy spiral steps to the room above, housing the bells. A small vertical ladder allowed access to a single plank with balustrade, to view the bells and to allow access to the next vertical ladder and up to the church roof.

And so Son No. 1 climbed the short ladder to the balustrade followed by me and Son No. 2.  It was then that it happened..The Bells..

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“Are they going to ring?” Son No. 1 asked – “Yes they’ll ring five times in about one minute’s time – it’s nearly five o’clock” answered the helpful curator.  Cue meltdown in a confined place, in a holy place, with my eight year old son yelling “God damn it – get me out of here”.. Meanwhile Son No. 2 has made a break for it and can’t wait to get up the ladder and onto the church roof.

I was torn between both sons – do I go to help the meltdown and prevent him falling amongst the bells.. or do I go to Son No. 2 and help him see the church roof.  Thank the lord for Nana’s (And that of one with a fear of heights) – without hesitation as the bells began to clang (and they are extremely loud when you stand next to them) – Nana said – “Don’t worry I’ll take him back down – you go back on up and see the roof”.

And so with the sound of bells and my son screaming and shouting “Nana I’m having a heart attack!” fading below me.. I made my way up onto the roof with Son No.2.  Wow what an experience and one that can only be repeated at the annual opening of the church tower.  The view was stunning and the experience breath-taking, on the top of the roof the names of two evacuees are scratched into the lead along with the Year 1944.  My youngest was in awe and I was so glad we’d been spontaneous.

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Climbing the ladder down it was not the bells I could hear – but the sound of Son No. 1 still screaming in the church below..  as quickly as I could I made it down both sets of spiral stairs and found Son No. 1 sobbing half way down the second set of stairs.  “Mummy I was scared”.  A big cuddle and I carried him as best I could down the remainder of the stairs and into the church.

Away from us the Nana is talking and explaining the situation to one of the church members at the church.  As I would hope in a church… but not from all people  – there was no judgement..  I was able to soothe and relax my son in peace.  I later found out that my mother had been passed some details of someone who might help us – a lovely act of kindness from  a stranger.

I spent another ten minutes or so hugging Son No.1 so hard and soothing him.  You see, towards the end of a meltdown as it begins to relent.. My son’s emotions have been so outwardly strong that they then implode on him.  His words are so downhearted, so sad “I’m so stupid, I want to kill myself, I wish I wasn’t your son”.  Early on I’d been told by our paediactric consultant that Son No. 1 may suffer with anxiety and depression – I can see why.

I often cry silent tears with him, but today I soothed, I hugged, I promised there would be another day.. Because next year I’ll prepare like an army sergeant going to do battle.  I’ll plan and I’ll ensure that we make it up that tower between the dongs of the bells.  And if I have anything to do with it the Nana will be there too..