PDA and ‘Sleep boxes’

Some recommendations for night time anxiety that might be worth a try if sleep feels like a distant memory!
Even with meds we had not achieved at night what was necessary for us to all healthily function the next day.

Attending a scope ‘sleep workshop’ was not the highest thing on a list of priorities for mummagrizzlybear but having begged for support and having exhausted all ideas I’d been able to graple hold of, I was faced with the workshop prospect. Daddybear exempt himself from this joy and so the delight was all mine. Sarcasm got me so far. My work-head told me to tune in and be as open minded as possible. Sure, I’d ask my clients to be open to the possibility of learning new things, so a dose of my own medicine was required. 

My doubts included the fact that, 

a)  I am an intelligent, competent mother who understands the value of a ‘night time routine’, so what could a workshop hope to teach me?

b) Nothing ‘text book’ had so far been successful for my PDA son and I did not have the strength or energy (through lack of sleep!) to sit through hours of explaining to professionals the complexities of my child 

However, we were beyond sleep deprived and I’d kind of already dismissed the advice of the autism support team about creating a sleep tool box, foolishly believing they had misjudged my son for someone who might be compliant and up for trying these things! So with little options left I took myself along to the workshop. At his worst babybear was fighting going to sleep until about 11pm and then waking hourly screaming and extremely distressed until finally ‘getting up’ for the day anytime from 4am.

The first thing I recall that sticks with me is just how tired we all looked. The reality of meeting other intelligent competent parents also failing in the ‘getting your child to sleep department’ and immediately I felt more relaxed, and a little less of a failure. We yawned our way through pleasantries and fuelled ourselves on coffee and most in the room couldn’t afford to stay for the full session as we all had children with complex needs and various other appointments/meetings and duties to attend to each and every waking moment!

The next thing that stuck was that night waking was ‘normal’. We learnt about a neurotypical persons sleep cycle and it was at this point I could see how close to waking each of us are every night on many occasions. We learnt more about the stages of sleep  and I acknowledged that I had misunderstood the stage of sleep where we dream, falsely believing this to be when we were in deep sleep. The sleep cycle offered me some insight into the times of night that my son was waking and from here I could see that the issue was less about the ‘waking’ and more about the inability to resettle himself and self soothe. On reflection he struggled to self soothe as a baby.

Routines were something I understood the importance of. I had a son on the Autism spectrum so we were familiar with routines. So much so that I often rebelled against them, resenting the rigidity it sometimes felt that we lived by. Nevertheless the night time routine was predictable and familiar and in much the same way so was the unhelpful coping strategies we had developed. You see, I’d learnt that he would not self soothe and settle off to sleep each night so I had a routine method for handling this. I was aware that it wasn’t helping him learn a better way of coping but it felt like the only option and the only way 4 members of a household would achieve some rest. Just as one could be advised to implement a new routine or a change to an already established routine, we were able to reflect over the changes that were necessary so that our son could become more independent and settled at night. And just like most parenting blunders, the biggest change was going to start with us and our behavior.

I also learnt about sleep diaries and was given a format to use. I’d kept diaries for weeks at a time previously. In fact I smirk whenever I open an old notebook as I find over the years I’ve kept many such a diary….turns out this little issue we were dealing with was history repeating itself time and time again. He’d regularly struggled to sleep and then had periods where he mastered it before swiftly returning to being the devil child who would not rest! But my sleep diaries did not offer a ‘pattern’ or an issue that could be pin pointed. More often than not they just diarised my despair! Along with sleep diary advice we were taught about the hours of sleep required by each age group and how this differed for children like my son on the spectrum. In addition we received guidance about how long it should take anyone to get off to sleep after a night time routine… 15 minutes!? (Allow 30 mins for children with additional needs) Even my biggest lad could piss about for up to an hour after ‘lights out’ and the advice from scope was that I was putting him to bed too early! I learnt the things to record about our night time battles so that we could begin to implement changes.

Over the years, I’d been given countless books on sleep success strategies, i’d tried every ‘trick’ in the book and at this point we were fortunately through the door with CAMHS and receiving a Psychiatrists support, guidance and prescription power. Our own GP had suggested Phenergan and other antihistamine alternatives leading up to this point, but nothing had improved the predicament. Along with the Risperidone (antipsychotic meds to alleviate some of the anger outbursts) babybear had been prescribed a form of melatonin (circadin) to assist the body in its natural sleep inducing chemicals. Mummagrizzlybear had hoped this would be the miracle cure. Both meds offered some benefits, both assisting with him being in a ‘calmer’ state at bedtime and on the lucky occasions they’d help him to pass out around the socially acceptable hour for a lad of his age. However, as others had warned me, melatonin can have a reduced effect after about 3 – 4 hours, and babybear (despite getting off to sleep) continued to have night wakings. He might get off to sleep between 8 or 9pm with the medication, so you could pretty much set your watch by his first stirring somewhere around 11pm and once the waking had started it was at least every 2 hours and finished off with an early rising somewhere between 5 and 6am. Even with meds we had not achieved at night what was necessary for us to all healthily function the next day.

So I returned from the workshop armed with knowledge and a determination to resolve this. However diarising our problems and making alterations to the routine by changing bedtimes and removing the unhelpful coping strategies would not be sufficient in my book; my PDA’er needs a more hands-on, in control type of motivation. I knew I had to introduce better ways to manage and role model the new expectations. Fortunately babybear has his very literal way of interpreting language. I can say “we must not scream in the middle of the night” and he can process this; but to act upon it I have to also give him an alternative solution. “At night if you wake you can … ” and there was my opening to introduce the idea of the sleep box.

Every child will respond differently to new ideas. Trust that you know your child best. For families living with PDA find the tactic that works today. On this occassion I used the tact of collaboration, humour and mild nonchalance. I introduced the idea that I’d ‘been on this course and had some suggestions about how we could all sleep better and that I’d also been shown how to make a sleep toolbox (slight white lie) but it was really only something I could do with his help, and it might ‘suck’, but hey we wouldn’t know how rubbish an idea it might be unless we gave it a go’. I then retreated and looked too busy to complete this task whilst also cleverly stumbling across a box we could have used if we were going to be bothered to make such a toolbox. It worked. Babybear was interested. “So what can we put in the box?” He asks. Again knowing his likely response if I became too eager I casually name dropped the sorts of things I’d put in if I were making one. Rule of thumb is that the contents should be anything you are willing to allow them to do during the middle of the night that might assist them in maintaining or returning to a calm state. Most of the items were mutually selected and we talked about the reason they might be helpful and examples of what we could do with each item. I’d already decided that iPads and noisy items were going to be a no-no. He’d fully play that sleep box to his advantage otherwise and I’d already worked hard to ensure technology had been removed at least an hour prior to the night time routine to minimize the ‘screen effect’ impacting on the sleep issues!

Into his box went the following:

  • A torch (he has a lamp in his bed already but a torch added a sense of security)
  • Mummagrizzlybears teddy (my most sacred childhood possession to demonstrate a giving of myself)
  • A clock (so he can satisfy his obsession about ‘time’, without needing to scream out ‘can I get up yet’)
  • His ‘worry monster’ (a teddy he can post notes into to help him shift on his worries – he has only ever ‘used’ it once and I forgot to empty out the worry but nevertheless he wanted it in there)
  • 3 of his most precious collectible items (his narnia figures with the agreement they could be played with quietly should he wake)
  • A photo album of him as a baby (looking at himself can occupy him for hours)
  • A picture of mum, dad and brother (in an effort to replace our physical presence)
  • His stretchy body sock (a sensory tool that makes him feel safe and secure)
  • A note pad and pencil (for writing down anything he needs to tell me or to put a worry in his worry monster)
  • A reading book (with the agreement he can have his lamp on to read if he wakes)
  • An aromatherapy sleep spray

I suggested we could decorate the box but for baby bear that was a step too far and he almost gave the box the big heave-ho having noticed that he’d unwittingly conformed! We moved on and made little of the box until bedtime when I got baby bear to tell daddybear all about it. Sounding in charge, he took to it like a dream and placed his box of goodies on the end of his bed. The routine changes needed some gradual delicacy. 

Daddybear and I had taken to lying with babybear each night after his meds and storytime until he eventually fell asleep. We had to alter this and the adjustment took some time. We began by NOT getting into bed with him. Instead we placed a chair in the room to read stories from. We then began by retreating from the room agreeing to check in on him in 10 mins. Some nights I took my shower after his story time just so he could hear me upstairs with him. We stuck to the plan and checked in on him, each time we found him to be awake we gently reminded him about his box and what he was allowed to do should he wake in the night. We also reiterated what we would like him not to do. The demand avoidance may well be accountable for his reluctance to actually use the box but interestingly he would not agree to moving the box from his bed to a shelf… It had to stay put!

The same night we introduced the box I also started using the new sleep diary format. After the first week what it showed was that his actual ‘sleeping hours’ were within the normal range for a child of his age. This was news. I’d convinced myself he just didn’t sleep! I was so tired and focused on the ‘waking’ I’d forgotten to log his actual sleeping periods. In that first week he’d woken in the night and instead of screaming the house down, he’d tiptoed in to wake me. In shock, I almost caved and cuddled him in to my bed but instead I returned him calmly to his bed and provided him with items from his box. On these wakings, it required us to repeat the “I’ll check on you in 10 mins” routine which was hard to endure but worth it. Seeing it through confirmed we were trustworthy and also reliable with the boundaries. All of this I believe has helped to reduce his night time anxiety. What we were doing before was unintentionally fuelling his fears by only confirming that he felt safe when he had us with him.

For 4 weeks I kept the diaries. We did not give in. We stuck to the plan. Each morning I was reassured that even if there had been night wakings he’d still achieved a ‘healthy’ amount of sleep. Each day we reinforced just how pleased we were and baby bear learnt to feel pride for achieving the goal of ‘quietly staying in his bed’. We had successfully shifted the focus from ‘going to sleep’ or ‘not screaming’ to something more positive and plausible. 

We had always believed that a dependent use of sleep meds could be counter productive in the long run and once life had become a tad calmer and everyone was getting more rest, we began to reduce the regularity of the melatonin. We choose to communicate very honestly with our son about meds and explained it to him that if he took them every night there was a chance that they could become ineffective. So on nights when it wasn’t essential that he got off to sleep, like on weekends we could try and go without. Then over time we tried every other week night and before we knew it, he was managing without on more nights than he needed it. On rare occassions where he was particularly distressed at bedtime he would be offered it. Its been well over a month now since he has used melatonin at night

I’m not certain which came first. The chicken or the egg? Did the sleep box reduce his anxiety or was it the changes to the routine that improved his confidence and ability to self soothe. Like any new skill or sport, to become efficient, one must practice practice practice. We too had to rehearse the more helpful strategies to become more familiar with them. Collaboratively we have introduced a new approach to the challenge of sleep and in doing so we have strengthened our resilience, improved our well being and developed a sense of reassurance and hope. Change can happen at any time. We can choose it to be so. You must first decide that you are willing to change and committed to it.