A blog that explores the concept of PDA as well as offering an insight into life with a child with PDA

Mollie hates going to bed and avoids it at all costs.  By the age of six as well as being a school refuser she was now also a going to bed refuser.

Not knowing, at that time, the real reasons for her refusal to go to bed we tried everything and I mean everything.

  • Talking books
  • A special pillow that played soft music
  • Bribery
  • Consequences
  • Rewards
  • As a last resort a TV in her room to at least encourage her to go up the stairs because there would be a good film to watch before sleep time

They delaying tactics that she was using just grew and grew and I would be at my wit’s end to just get her into bed.  It could easily take one hour to get her settled.  It was doing my head in but oh how I have wished in the years to come that bedtime could be achieved as quickly and as swiftly as one hour.

  • She couldn’t walk up to bed because she would go into baby mode and require carrying.
  • The floor would be made of lava and so she couldn’t possibly walk out of the lounge.
  • Her body would go like a limp doll and I would have to pretend to be the puppet master holding her under her armpits and swinging her legs forward in order to get her to move.
  • Once upstairs we would have the prolonged episodes in the bathroom,  once she was sat on the loo it was impossible to get her off.
  • Then we would have the ordeal of selecting a film.  I would have to pick 8 films and then read out the story of each one and then read out the viewing time and then put them in time order and then she might, just might pick one.
  • Once the film was in we would have one delay tactic after another to prevent me from leaving the room.
  • By the time I eventually got back downstairs I would wait for the shouting to begin.
  • Mum get me some fruit, mum I want a drink, mum I don’t like this picture on my wall, mum, mum, mum.
  • Mollie suffered from terrible night terrors and I wondered if this could be the reason why she was so reluctant to sleep.
  • It wasn’t long before, even though we were getting her upstairs by about 9.00pm, that she was staying awake well into the early hours.
  • I would go to sleep whilst my husband would remain, on alert, downstairs.
  • I would often be woken by Mollie trying to tie me up in my sleep, stealing my rings from my fingers or punching me.

By the age of seven we were in an even worse state and would have given anything to return the previous level of avoidance.

  • Trying to get Mollie into bed was like trying to move an erupting volcano.  You just couldn’t do it without getting seriously burned.
  • We endured months of explosive tantrums that lasted for hours and never, ever resolved the issue long-term.
  • Eventually we just decided to go with the flow as best we could.  Screaming tantrums in the early hours of the morning with exhausted parents screaming back isn’t ideal for anyone especially when you have another child in the house.
  • Getting her to bed was impossible and we could only achieve it at about  1.00am with either me or Lee sleeping with her.  It would often be 4.00am – 5.ooam before she nodded of.
  • Following two years of allowing her to have full control and attention during every evening and doing what ever she wanted until the early hours of the morning we have made some progress.
  • The complete withdrawal of the demand to go to bed was removed but it took two years of hard slog to slowly turn around the damage that a night-time demand had caused.
  • Mollie will now often go to bed by herself at between 11.00am – 12.00am and for a lot of families this would be a disaster but for us it is a huge improvement.  Even if she can’t go to sleep, over the xmas holidays she would often be awake all night, she will at least now stay in her room and allow us to sleep.

So why does Mollie hate going to bed and going to sleep so much.

  • Going to bed is a demand and demands prompt anxiety and refusal.
  • Going to sleep is a demand and demands prompt anxiety and refusal.
  • Going to sleep is a transition when one day ends and another one begins.  Mollie does not cope well with transitions and does not want to go to sleep because she doesn’t want the day to be over.
  • Children with Autism can produce low levels of melatonin which is the body’s natural way of letting us know that we are tired and ready to go to sleep.  Mollie is prescribed with Melatonin to help her to go to sleep but at the moment she is refusing to take it.
  • The moment before we go to sleep when we feel that we are drifting off into a land of dreams is for many children with PDA the ultimate loss of control.  Some children will avoid going to sleep because of the terror that this loss of control provokes.
  • It is difficult to be in control of your dreams while you sleep which is another reason why sleep is a scary place that is best avoided by many children with PDA because they do not like the loss of control that sleep brings them.
  • Even while Mollie sleeps her PDA mind continues to rage on and torture her. ” Leave me alone, stop bossing me about, give it me back, stop staring at me, shut up and so on are the shouts and screams that we hear on a regular basis throughout the night and sometimes she even sobs her little heart out while still in her sleep.

I hope that our experiences of sleep issues can be of some help and offer some understanding as to why many children with PDA find going to sleep such a huge mental barrier.

Thank you reading this post and please feel free to comment.

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Comments on: "To Sleep Or Not To Sleep That Is The Question" (2)

  1. Jaime Reeser said:

    I can not begin to thank you enough for writing about your experiences. I just discovered your blog after trying to figure out what is going on with my 12 year old son. He does not have the official diagnosis of PDA since I just found the diagnosis. I will be forwarding the information to his doctor. I am so glad you discuss the sleep issue. My son hates going to sleep but also hates waking up and your reasons have helped me to understand why. I will be talking to him more and hopefully that helps. Do you find Mollie hates taking medicine of any kind? My son hates it. It has taken a year for him to start taking the Melatonin. Again thank you.

    • I’m so pleased that you have found the blog useful. Yes Mollie has gone through periods of refusing to take melatonin but she is fine taking other medicines. I think that she would refuse the melatonin because, for her, going to sleep was of no benefit and she wanted to control her own sleep times. She takes other medicines and is currently on fluoxetine because she feels the direct benefit to herself. In the case of fluoxetine her nerves are far calmer. She had no desire to actually go to sleep therefore there was no benefit in taking the melatonin. Hope this helps.

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