Tag Archives: sleep service

Building a better bed time routine

Avleen

Recently we were contacted by Hardeep, whose daughter Avleen was not sleeping at all. This was having a huge impact on the whole family. Claire from our Sleep Service offered the family some guidance and now, just a few months later, Hardeep tells us about their journey.

My daughter Avleen was born prematurely at 28 weeks but is now five years-old. She was diagnosed with Autism in 2018 and this often causes sensory issues which can lead to meltdowns.

She had disturbed sleep until she was 3 years-old and then things started to get much worse. She wouldn’t nap at all through the day and even though she was exhausted, she would wake up through the night – sometimes hourly.

It inevitably started to affect her school work because she was so tired during the day that she couldn’t concentrate and would act out.

Things came to a head when I was pregnant and had my second child. Avleen was waking up through the night and wasn’t able to settle herself. Once her sister Harneez was born, the crying of the baby in the night would also affect Avleen. It was taking a huge toll on the whole family.

We saw a paediatrician who suggested that we try melatonin but I was hesitant to try this as a first step. They also suggested that we get in touch with the sleep team at Cerebra for some advice and support.

We were put in touch with Claire who listened to what was going on and asked lots of questions to help her to understand our situation. We worked together to put a plan in place to improve Avleen’s sleep.

Claire suggested that we avoid giving Avleen a bottle before bed but rather give her a small snack if she was hungry. We were also advised to switch screens off at 7 to allow her to start winding down before sleep.

We started to give her a bath as part of her evening routine and this allowed Avleen to start to recognise for herself when it was nearly bed time.

Claire was in frequent contact during this time and for every issue that we had surrounding sleep, she was looking for a reason why it would be happening so that we could adjust Avleen’s routine accordingly.

After completing every step of the routine, we were finally able to bring Avleen’s bedtime forward to 9pm. She started to go to bed much more relaxed and as a result, was finally able to sleep through the night without any episodes of waking.

Once her sleep started to improve we even realised that part of the problem previously had been that she had been extremely restless in her sleep and her hair was getting tangled. This was causing her sensory issues and was leading to meltdowns.

Before we worked with Claire, Avleen was anxious about everything, especially at night. Now her behaviour is much better because she is much more well rested. She even recognises when it is time to go to bed and asks to go to bed herself – something that would have never happened before.

The only time that she wakes during the night now is if she has a cold or is suffering with hay fever. This obviously disturbs her sleep but is understandable.

She will sleep for 10 hours now which is amazing and it has had a hugely positive effect on her behaviour.

She is now able to concentrate much more at school and we have noticed that her asthma is much more under control.

It’s not just had a positive effect on Avleen but has also made things better for the entire family. I have gained so much confidence with the help of Claire and now I know that I’m not going to have any issues getting her to sleep. We’re all far more rested and this has meant that we are able to cope with everyday life much more easily.

If you would like to find out more about our Sleep Service, including how you can get help from one of our Sleep Practitioners, check out our website.

What impact do sleep problems have?

Although the odd night of poor sleep may not affect daily abilities, persistent sleep problems can have a huge impact on individuals with and without intellectual disability and their friends, families, colleagues and carers. For all individuals, lack of sleep is associated with problems with mood, learning, memory and behaviour.

This article is taken from our Sleep Guide which you can download for free on our website.

Learning

Importantly, poor sleep affects motivation and concentration, which means that individuals who are experiencing sleep problems may make more errors at school/work, particularly on repetitive tasks. This means that if your child is struggling on ‘easier’ tasks at school (which are often repeated until they are ready to move on to harder tasks) it is worth speaking to their teacher, who may be under the impression that they are struggling because of their intellectual disability, rather than the sleep issues.

Sleep is also vital to a process called memory consolidation, where memories from the day (e.g. memory of that is learned at school) are strengthened. If sleep is disrupted these memories may not be stored properly, making it harder for children to use what they have already learned during the next day at school.

Challenging behaviour

Poor sleep may also reduce an individual’s ability to cope with changes in their routine. You may notice that your child shows more challenging behaviour (for example, self-injury, aggression, destruction) when they have not slept well the night before. This is common in children with intellectual disability and also in children and adults of typical development! We are all more irritable when we have not slept well and are therefore more likely to show behaviours which indicate that we would like certain tasks to end or situations to change.

Since individuals with intellectual disability may have limited ways to communicate their feelings and preferences, challenging behaviour can be a very effective way of indicating needs or desires (for example for a task to be taken away). It is natural for parents/carers/teachers to want to respond quickly to the challenging behaviour, which means that it is more likely to occur again the next time they want a task to be removed. For more information on mutual reinforcement of challenging behaviour, see “Parent response to waking” on page 10 of our Sleep Guide, and also our factsheet on Managing Challenging Behaviour.

Parents of children with intellectual disability therefore have a lot to do: comforting children with sleeping problems, acting as an advocate for their child’s learning and health, and managing challenging behaviour. Often parents and family members experience a loss of sleep themselves, which can make managing these aspects of parenting more difficult and may even contribute to low mood and impaired concentration.

It may feel as though your child’s sleep problem is out of your control or that you do not have he time/resources to invest in fixing it. However, after thorough assessment, there are some simple intervention strategies available in Part Three of the guide which can help to improve sleep.

You can download our Sleep Guide and our new tips and techniques booklet free of charge from our website. If you’d like some individual advice on tackling your child’s sleep issues please get in touch with our Sleep Team.

My child just won’t go to sleep

Small girl waking her parents early in the morning.This article takes a look at what you can do if your child just won’t go to sleep. It’s taken from our Sleep Guide which is available to download for free.

What should I do when my child just will not go to sleep?

Often settling problems can be caused by a lack of bedtime routine or perhaps the bedroom being associated with activities other than sleep. However, even after establishing a calming bedtime routine, it may be that your child does not want to go to sleep and cries out to you. This may be distressing for you as a parent to hear and your natural reaction may be to go back into your child’s bedroom.

As described in Part One of the Sleep Guide, this may be contributing to the problem, and so the next step for intervention would be to stop reinforcing the settling problem. This may require ‘ignoring’ your child’s cries, which is known as extinction. However, this can be very difficult for parents and children, so graduated extinction is recommended.

Agree a set amount of time (e.g. 2 minutes) that you will allow your child to cry for, before briefly checking on them.

  1. When your child has been crying for the 2 minutes, go in and check them. This checking should only be to reassure yourself that the child is alright and to tell them to go back to bed. When you check on them, do not offer physical interaction, music, or any other aspect of the bedtime routine.
  2. Leave the room and wait the agreed time before repeating the checking procedure.
  3. You may have to repeat this many times before your child eventually falls asleep, so it’s a good idea to start on Friday night or another evening where no one has school or work the next day.
  4. The next night, gradually increase the amount of time you allow before checking on your child (e.g. from 2 minutes to 4 minutes), and continue to keep the checking procedure brief.
  5. Repeat this until the child’s crying at settling reduces.

If the suggested times here are too long, try just waiting for one minute before checking and then gradually increase the time by 30 seconds each night. Eventually your child will learn to settle themselves to sleep without you there

If you’d like some individual advice on introducing this technique please get in touch with our Sleep Team. 

Epilepsy and getting a better night’s sleep

Jonah and Louise

Louise recently contacted our Sleep Service for some advice to help 9-year-old Jonah get a good night’s sleep. Jonah has recently been diagnosed with frontal lobe epilepsy and Louise told us their story.

Jonah has never been a great sleeper and not having a good night’s sleep just became a normal part of life for our family.

For a while we were trying to push him to sleep in his own room but then we starting noticing that something wasn’t quite right. He was making strange, rhythmic movements in his sleep.

We saw Jonah’s GP who told us to keep an eye on it but it steadily got worse. He would be waking up 3-5 times a night and this eventually developed into dystonic posturing – his right arm would go in the air and his leg would go stiff.

We started filming Jonah at night so that we could show the GP that his condition was worsening and of course, having so many seizures every night meant that none of us were getting much sleep. It was taking a toll on all of us and I began to feel extremely guilty about having tried to make him sleep in his own room when he’d been having seizures all along.

By February 2018, Jonah had been referred to an epilepsy specialist and we finally had enough evidence to show that Jonah was getting worse and they were able to diagnose him from this. They put Jonah on medication to help manage his seizures and he responded straight away which was great but it made him very tired in the day. This wasn’t helped by the fact that he still wasn’t settling well and he still didn’t want to be in his own room – part of me still wanted to keep an eye on him in case he had a seizure.

That’s when a friend suggested that we contact Cerebra’s Sleep Service for support. We received our sleep pack and immediately started using some of the tips that were in there.

Self-settling was the most important thing for us to get Jonah into the habit of doing because it meant that we wouldn’t have to intervene if he did wake in the night – he would just settle himself. We used the gradual withdrawal method to so that it was a gentler process for both us and Jonah and if he woke up during the night, we would just take him straight back to his room.

I first noticed an improvement about two and a half weeks in when Jonah got up in the middle of the night to use the bathroom and took himself straight back to bed. We were thrilled!

We’re now six months down the line and the change in not just Jonah but the whole family is unbelievable. I had been finding it more and more difficult to function in work because of the lack of sleep but now I’m doing much better and Jonah is also doing much better at school because he is now able to concentrate much better. We’re even moving him into his own big bedroom.

The Cerebra Sleep Service has been great because a lot of the sleep advice you usually find is for much younger children, but their advice really helped not just Jonah but the whole family finally get a good night’s sleep!

You can find out more about our Sleep Service and the support we offer here.