Bedtime Anxiety

I wanted to expand on my last post about sleeping problems. I thought some people might find it helpful to hear what practical steps we took to help our son back into getting a good night’s sleep after his anxiety had got out of control.

Before we got some proper advice (see https://aspergersanxietyadhd.wordpress.com/2014/03/01/59/) I scoured the Internet for Autism/ADHD/anxiety specific information but found it really difficult to get anything concrete and genuinely useful. What I did realise was that there are many people out there experiencing similar problems. So if you are one of those people, I am writing this for you. Of course I can only say what worked in our situation, but you might find some of it will work for your child as well – bearing in mind we were mostly following advice given to us by an expert.

I see my son’s sleep difficulties as relating to his three conditions in a way that they all intermingle to cause a very complex scenario. I will first explain the difficulties that we started out with, and then describe how we addressed them.

Asperger’s Syndrome

  • His sensory issues mean he is uber-sensitive to every noise. He hears tiny noises that a lot of people wouldn’t notice and his imagination gets a bit carried away, making him think the noises are caused by hiding monsters, ready to attack. He also hates louder noises. Unfortunately in our house, the boiler is housed behind the kids’ sliding wardrobe doors, and even worse, the boiler which is in a continuous flux between being newly fixed and going on the blink again, makes some very creepy noises which I think would freak most kids out, Asperger’s or not. Luckily the noises have not been so bad recently, but the memory of them is enough to frighten my son.
  • He is also visually sensitive and gets frightened by any pictures on the wall that have eyes on them, as he thinks the eyes are moving.
  • He has a ‘typical’ Asperger’s personality in that he feels an urge to control everything if he thinks that things are out of control (according to his standards). This had led him to kick back against attempts to coerce him into staying in bed.
  • His mindblindness to the needs of the rest of the family mean that telling him, for example, that it is not fair on his sister to wake her up in the middle of the night, fall on pretty deaf ears. It’s not that he doesn’t care, but his own agenda comes first when the stakes are high.
  • His low awareness of social rules and appropriate behaviour mean it is not particularly obvious that night is when everyone should be quiet and be asleep, not awake and attempting full blown conversations or worse.

Anxiety –

  • His anxiety is obviously interlinked at a deep level with his other conditions. Whereas other kids might be scared of monsters at a slightly younger age, the delayed emotional development associated with Asperger’s means he is still terrified at almost eight years old.
  • His anxiety is irrational and severe and obliterates any logical thought processes.
  • He experiences a strong separation anxiety when away from me, and his instinct drives him to get close to me or to get me to come to him in the evenings and night times. He has this same anxiety when going to school or to see his dad, but it is heightened at night because of his fears.

ADHD –

  • His hyperactivity and fidgetiness make it very difficult for him to settle down at night.
  • His mind is always on the go.
  • His impulsivity means that he is likely to give in to his anxieties without resistance, as adrenaline + fear + impulsivity = zero ability to reason or control the fear.

So it had been suggested to us that we should just be strict and withdraw from his room at bedtime; go downstairs and not give in. This was actually the same advice given out later at the sleep clinic we attended and was the only piece of advice we did not follow as we knew it wasn’t going to work with our son. For weeks we had attempted variations on this approach, but it had resulted in upset and arguments, increased anxiety, and evenings where our son would have gone to sleep on the stairs and nights when he would loiter around in doorways at 3am or drag his duvet onto the landing, and we would be butting heads for hours.

But neither did we want to allow him to think he could get in our bed every night. I have a pelvic condition and fibromyalgia and having an eight year old the size of a ten year old, who literally can’t lie still for more than a few seconds at a time, squeezed into your bed with you, does not make for a pain-free night’s sleep, nor a pleasant mummy in the morning. Speaking to another mum at the sleep clinic confirmed that we were right to clamp down on the co-sleeping as she had only just got her 14 year old son out of the guest bed in her bedroom.

Our fresh assault on the problem took on a two-pronged approach. There was the bedtime routine, and the gradual withdrawal process, incorporating a lot of reverse psychology and bribery.

It wasn’t until we started to closely examine the existing bedtime routine that we found things that weren’t helping the situation. We were already doing reasonably well – we had cut out eating before bed, the kids were having a drink, putting pyjamas on, brushing teeth, having stories and cuddles, settling down with teddies… but some nights they were putting their pyjamas on downstairs and sometimes upstairs, the same with stories. Some nights they weren’t doing their teeth, some nights they had a bath and others they didn’t… This might have been fine for neuro-typical kids, but there was a lot of room for fine tuning. So this is what we do now – without fail, every night, at 7 o’clock step-dad goes and starts the bath running (he does this as I am rubbish at keeping to time myself). When I hear him do this, I make the kids tidy their stuff away and give them a drink and any medication. Then they run up and hop into the bath. We set a timer on a mobile phone and stand it up on the radiator so our son can see the time counting down, and they have 15 minutes. The only variation is some nights they will wash their hair and some nights they will have a shower cap on. But if they don’t wash their hair, my son still likes me to blast his hair with the hairdryer for a few seconds, because it says on the VISUAL AIDS on the wall that after getting his pyjamas on, he has to have his hair dried. He is not adamant about this every time, but if he starts to mention it, I just do it, or even blow on the back of his hair with my mouth for a few seconds and this satisfies his need to have it done!

Image

Free printable charts from http://www.visualaidsforlearning.com, with some of my own symbols thrown in (before the laminator arrived!)

So, the important thing to stress here is that the bedtime routine has to have a LOGICAL ORDER. So downstairs things, like drinks, belong to downstairs, and then bathtime signals getting ready for bed. After they have gone up, they do not go back down.

I also have to stress that for years I have been guilty of only half acknowledging how much my son cannot retain verbal instruction. It is blatantly obvious that he really struggles with this, but because he is so articulate and bright, I think I thought that visual aids would be patronising in some way. But oh my word, I wish I had used them sooner. They have made a lot of difference. I have to prompt him to check them a lot, but both the kids LOVE them and the first couple of nights using them, both kids kept repeatedly thanking me for putting them up. I even think they help me and I’m not joking!

The kids are in bed ready to go to sleep at 8pm. An hour might seem like a long time for getting settled but my kids are very good at doing anything other than what they are meant to be, so it works for us. And it is a late bedtime for a four year old, but they share a bedroom and so we don’t have much choice if we want bedtimes to run smoothly.

My son would have the bedroom light on to go to sleep if he could. My daughter sleeps near the door and hates light even from the landing shining in her eyes. We had to use careful negotiation, persuasion and bribery to get my son to agree to have a dim lamp and a plug night light on, landing light off and bathroom light on. We made him feel he was getting something out of it by saying he would have to have the door closed to if the landing light was on, so by having the landing light off he ‘earned’ having the door wide open.

We also talked openly to him about darkness promoting the body’s production of melatonin and told him he might be lying awake for ages longer if we didn’t get the room dark. This was attractive to his sense of logic and worked a treat.

We may have to look into getting blackout curtains when the lighter nights come around (not long now!!) but we will see how it goes.

The agreement is also that I make sure the heating (ie ‘the boiler noise’) is switched off before I leave them to go to sleep. CAMHS had advised me a few months back to not turn it off and make him get used to it, but we were getting nowhere fast. I now don’t see the point. The more I had forced the issue, the more scared he got. Perhaps it was because he felt not in control of the situation and like I said, it would scare most kids. If I can get him to go to sleep virtually in the dark, which I see as more important, and put the heating back on after he has gone to sleep, what does it matter if I turn the boiler off for him? It is one of only two minor concessions I have had to make in the end.

To begin with, even getting him to allow me to sit at the top of the stairs, rather than in their room, was difficult enough. We used a sticker chart (‘the brave chart’) quite heavily at the beginning, which led to a reward when the chart was complete. Work with the fact that your child might have strong special interests. We promised to add to our son’s collection of Lego Marvel Superhero Minifigures.

I sat at the top of the stairs for several nights, alternating with my partner. Then as more time passed, I was able to move down another step each night. It took a few weeks, but now I can go downstairs completely and sit on the settee, which is handily close to the bottom of the stairs. I just read a book and have the telly off, so that my son knows I can hear him if he needs me. The main reason for getting a child to go to sleep without any reliance on their parent is that if they wake up in the night, they will not need the same ‘crutch’ to help them fall asleep again. Giving a child anything to aid them going to sleep, such as music, might make them dependent on that sing, so that if they wake up in the night and that thing is gone, they will struggle to go back to sleep naturally.

Some people recommend allowing the child to read in bed. However my son used to end up reading until well past the time when he should have been asleep. I myself used to read in bed as a child and found I just wanted to stay awake as I loved reading so much.

The fact that my son can now get to sleep without any reliance on me has meant that his visits into our room and sleeplessness in the night have all but stopped apart from rare occasions. However we also had to use techniques in the night to reduce our son’s anxiety about being awake by himself.

Again I used a gradual, structured process which helped my son feel everything was under control, and bribery. There was an element of me telling my son that he could decide when he was ready to try things. Growing up, I was similar to him in that the more someone told me to do something, the more I didn’t want to do something. It is not being stubborn, per se, but more to do with feel anxious when under pressure to do something that you aren’t sure if you can do. If putting the control in the child’s hands begins to create a stalemate situation where he is not moving or making any effort, as happened with us, it is important to assess the situation and see if some strong persuasion can jimmy things along. I would say, ‘Come on, you are more than ready to take the next step. Remember you thought you couldn’t do the last one and you ended up saying it was easy in the end. And you know I always say I never ask you to do things that are too hard for you.’

So step by step, we got him to get back in his own bed in the night with me popping back and to every couple of minutes to reassure him. Getting him to stay in bed by himself was a big step and required more instant rewards the next day. Next I said to him that if he would just stay in bed upon waking, he was allowed to shout me (I am a light sleeper), and I would stay awake and be ‘on guard’ for him so he didn’t have to do any worrying himself about monsters or ghosts. I would lie awake and be vigilante for him whilst he went back to sleep. For a few nights I would hear his little voice say, ‘Mummy, are you still on guard?’ and I could answer in my fake ‘I’m really awake’ voice, although I was half asleep.

The next thing we knew, everything was coming together and he was sleeping through at night.

The last thing to tackle was getting up in the morning. He had a tendency to wake up from about 5am onwards and that was then morning time for him. This was driving us mad though. So we got a digital clock and explained that if the first number was a number less than six, then it was still sleeping time and he wasn’t allowed to get out of bed or call out. This can be reinforced with visual aids but we found we did not need one with this. It worked pretty well almost immediately, and now he usually sleeps til 6.15. At this time though we make sure he does get up, regardless of if he is tired or not, as it ensures he is tired enough to sleep the next evening. It is called anchoring the morning.

During the process, we also looked at how much noise the children could hear coming from downstairs (telly, phone conversations) and from outside (squeaking, banging gate) and what the sleeping environment was like (we took most pictures off the walls as the eyes on them were making my son’s imagination run riot).

A word about bribery: Some people disagree with bribing their children, but if it is needed to get a child out of habits that are causing them far more harm, then it is without doubt the lesser of two evils in my book. I have found that my son has lost all interest in his reward chart and trying to get the next toy, as in the end it the great feeling he gets from being brave has been its own reward. At no time has he appeared to deliberately act up in any way in order to create a situation where he could easily win more rewards. After a bit of a rest from the chart, it will seem ‘new’ to him again the next time we decide to out it to good use again.

I think I have exhausted every part of our experience that might be helpful to someone else. I will be really pleased if anyone is able to use this information to improve their own situation. Let me know if you do. And if you have any tips of your own, please leave comments.

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When Your Child Won’t Sleep – Help IS Available

If you have one or more children in your family with sleep problems, you will have experienced the impact that sleep deprivation has on the whole family. The child who doesn’t sleep has more difficulty managing their own emotions and behaviour during the day. Siblings might be woken in the night and have similar problems due to tiredness. Parents feel drained and less able to cope with day-to-day life, with a lower threshold when managing the children’s increased outbursts and meltdowns. The evenings become a time of dread and desperate parents don’t know what to do or where to turn as nothing seems to help. However there are places you can turn to for advice.

My children have always had periods of difficulty with sleeping which have come and gone over the years. About ten weeks ago though, my son’s problems seemed to crank up several gears. He has ASD, ADHD and debilitating anxiety. He is almost eight. After weeks of him refusing to stay in bed without someone in the room, both at bedtime and throughout the night, we were lucky to be informed about a ‘sleep clinic’ being hosted by an autism organisation 20 miles away (Space4Autism, Macclesfield). Since everything else we had tried was having no effect, we jumped at the chance to make the journey.

The talk was by a lady called Chris Hoyle, ASC Sleep Clinic Coordinator from the Together Trust. She is about as qualified as you can get in the field of Sleep and Autistic Spectrum Condition, and she taught us how to get both our children to sleep at night. She was a god-send to us. Before, we had felt we were flailing in a sea of conflicting information and didn’t know what to stick to and what to give up on. Knowing that Chris had already helped many people meant we had trust in her advice, and when we returned home, we had the confidence to implement new strategies and be consistent, knowing they would work, if not immediately, but soon at least.

Now our son is usually asleep by 8.30pm. Sometimes he sleeps through. Sometimes he wakes up but gets himself back to sleep. Things don’t always go according to plan but at least we know what to do now. And getting up at 6am, he is still an early riser, but it is better than 5am.

I would advise anyone who’s child has additional needs and difficulty sleeping, to seek expert advice. Don’t put it off – you know how much you crave a good night’s sleep again.

The Together Trust only operates in the North-West and surrounding areas. If you live in this area you can check www.togethertrust.org.uk for details of further sleep clinics. If the website doesn’t appear to have been updated, you can email Chris Hoyle at choyle@togethertrust.org.

For those of you in different parts of the UK, there are a couple of national charities that do the same kind of work. Visit www.thechildrenssleepcharity.org.uk and www.cerebra.org.uk to find out what help might be available to you.

First Post Nerves

One of my big problems in life is my unfaltering ability to procrastinate. Not so much verbally, but rather finding a thousand reasons to put things off or see things through.

It took me five stop-start attempts, spanning seven years, four different degree paths and one period of maternity leave, to finally make it through university.

So starting a blog seems like a ridiculous idea: since my diagnosis last year I decided to stop fooling myself about what I was and wasn’t going to do. Just tell yourself you won’t see it through, before you waste your own, and everybody else’s time. And this advice has seen me well over the last few months and I’ve let myself breathe again, giving myself a rest from running round like a headless chicken (which is how Asperger’s feels to me, a lot of the time).

Only with this, I have had a burning need to do it. Ever since my family’s Asperger’s journey began with my son 16 months ago, I have had a growing feeling that I am meant to be doing something with this. Asperger’s has been my Aspie obsession for some time now – living it and learning about it. Now I want to use that to help others and raise awareness (although I hate that term – why do I use it??).

I like to get the instructions on things before I do them. But I swore I would not procrastinate and worry so much this time. So I read some fantastic advice from a fellow Aspie here http://blog.penelopetrunk.com/2006/11/10/the-easiest-instructions-for-how-to-start-a-blog/ These instructions helped me to not faff about. Penelope Trunk manages to turn ‘no one is reading your blog’ into a reassuring thought rather than a depressing one. And with that, my anxiety about beginning is gone.

That was all I needed, apparently.