Category Archives: Information and Advice

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.

Handy tips for summer holiday sleep

older boy asleep

During the summer holidays the change in routine and light, warmer nights can often make sleep difficult. It can be even harder for children who don’t sleep well anyway. Our sleep team give their top tips for getting a good night’s sleep this summer.

  • Keep the bedroom as dark as possible at bedtime. Well-fitted blackout blinds can be useful. This allows our natural melatonin to be produced.
  • In hot weather, during the day keep windows shut and curtains closed to keep rooms cooler. Open the window in the evening if you like, when there may be a little breeze.
  • Look at using cooling pads/cooling pillows if their room is very warm.
  • Avoid caffeine (e.g. Coffee, some fizzy drinks, chocolate etc) in the 6 hours before bedtime.
  • Try and keep bed and wake times consistent, eating at similar times also helps with our internal body clock.
  • Avoid exercise in the hours before bed – this raises our body temperature, which can make it harder to fall asleep.
  • Using visual resources can help with changes to routine (visual timetables, social stories, checklists etc).
  • Use a fan to help keep bedrooms cool – the white noise it produces can also be quite calming.
  • Spend an hour before bed engaging in calming/relaxing activities (if you are away take some with you).
  • If bedtime during holidays is significantly later than during school, spend the last week of the holidays slowly bringing this earlier by 15 minutes a night. This is much easier on our body clock than a big change in one night.
  • Run cold water over wrists and feet before bed to help keep cool, or have a bath before bed as this helps to cool the body. Try to avoid very cold showers as these can be stimulating.
  • Play calming music/white noise at bedtime and throughout the night to drown out the noise of others playing outside.

You can find more information in our sleep resources. If you would like to find out more about our Sleep Service and how you can get more help and advice with your child’s sleep, please visit our website.

Factsheet: Continence mythbuster

This factsheet busts some of the myths about assessment of continence needs and the provision of continence products.

Myths busted in the factsheet include:

  • Children and young people are only entitled to a maximum of 4 continence products per 24 hours.
  • Continence services can refuse to provide a particular type of containment product, e.g. “we don’t provide pull-ups when children are toilet training”.
  • Continence assessments cannot take place at a child’s home
  • A child’s supply of continence products should be stopped if a family isn’t able to attend an appointment or reassessment
  • A child cannot be referred to the continence service for assessment and support until s/he has reached a certain age.

Summer reading from our library

Summer reading

Why not take a fresh look at what we have to offer in the library.  We have heart-warming true life stories, best sellers or if you want something a bit more lighthearted we have that too.

Here are a few suggestions

book cover - The Spark

L6480 – The Spark
by Kristine Barnett
A mother’s story of nurturing genius of her son with autism

L6654 Toast: autism in the early years
by Alice Boardman
This is not a textbook, this is real life

L6728 Toby and Sox:
the heart-warming tale of a little boy with autism and a dog in a million
by Vikky Turner

L6816 – The Reason I Jump
by Naoki Higashida
A Bestseller – One boy’s voice from the silence of autism

L6519 – Mindfulness: a practical guide to finding peace in a frantic world
by Mark Williams
A life-changing bestseller including a CD of guided meditations

L6579 – A Different Kettle of Fish
by Michael Bartob
A day in the life of a physics student with autism

C0296 – Inside Aspergers Looking Out
by Kathy Hoopman

For enquires about the library please go to the library page or email Jan the librarian on [email protected]

SEND funding in England: the Government needs your views!

Last week the Department for Education (DfE) in England made a call for evidence about SEND funding. As many of you will know and have experienced, the SEN system in England was significantly reformed in 2014 with the introduction of the Children and Families Act but that wasn’t the only change to have a big impact on children and young people with SEND.

Eighteen months or so prior to that the government made significant changes to the way SEND was to be funded at the local level. The combination of the these two major reforms has had led to numerous accounts of serious issues for children with SEND with almost daily news stories of exclusions, head teachers saying they have no money for SEND and parents taking local authorities, and even the government, to court for matters relating to funding.

The consultation is open until 31 July and the online response form can be found here.

The DfE have also asked the Council for Disabled Children to organise a small number of workshops across the country, so that they can discuss the themes in the call for evidence in greater detail. If you would like to attend one of these events, you can register your interest at [email protected], giving your name, role, organisation and email address. They will send you information about the events as soon as it is available.

Bizarrely, the call for evidence doesn’t include special school funding or school/college transport. Families are telling us that problems with the latter continue to be a serious issue for some parents meaning that sometimes they have to reduce the hours that they work or even consider giving up work all together. In many cases, getting a child/young person with SEND to school or college and providing a meaningful educational and social experience needs all the pieces of the SEND funding jigsaw to work together: it would be great if the DfE could focus on all of the pieces and not just some of them.

The long-term effects of unreliable, inconsistent support in CAMHS

Mair Elliott writes about how unreliable and inconsistent support from CAMHS has had an impact on her. You can read more of Mair’s posts in her blog. We’d like to hear about your experiences of delays or inconsistent support from CAMHS.

“When we discuss the high staff turnover, lack of reliable support, and other issues within CAMHS services we often think about the immediate distress that is caused to the young person in need of care and treatment. However, the ongoing effects can be just as distressing.

My experience of CAMHS, as with many other’s experiences, was of unreliability, numerous staff changes, lack of communication, and stop-start therapy. I’d invest my trust in a therapist only to have it broken when they departed at short notice. This happened over and over again. It was this continual loop of breaking my trust which has left me with some pretty serious insecurities.

Over the past couple of months, my therapist, whom I have been seeing for over a year, has had to take significant leave for various reasons outside both our control. Unexpectedly, it has triggered some deep insecurities within me. Yesterday she informed me that she’d have to take time off and I wouldn’t be able to see her for another 3 weeks. I am feeling incredibly vulnerable and upset over this. I don’t trust that she will come back, I don’t trust that I won’t be left stranded without support, I don’t trust that my trust will not be broken. Part of me feels that I can’t continue seeing her, that I should disengage because it hurts too much to have my trust broken over and over again. I know that this decision would leave me without any support, but right now that seems less painful. Another part of me is compelled to do something drastically self-destructive in order to prove to the CMHT that I really need support, that I’m not safe and can’t deal with this on my own. Unfortunately, my experiences have also taught me that the only way to get help is to do something drastically self-destructive.

I have very little point of reference for a stable, consistent therapeutic relationship, where I don’t need to continually prove I’m sick enough to be worthy of support. Therefore, it makes sense that I struggle to engage and trust in mental health professionals. My experience is that they cause me more pain, build my expectations and then let me down, and wait until the last minute to provide patchy support. Its almost as if I’m in an emotionally abusive relationship. Why should I invest my trust in professionals, when this is my previous experience?

The most shocking thing to me is that had I not had these experiences of CAMHS I wouldn’t have these trust issues and insecurities. I grew up in a loving, stable, nurturing environment, this fear of trust, abandonment and neglect didn’t exist before CAMHS – it was CAMHS that caused them. How can it be that a health service can cause this long-term damage? I put my trust in a service to support me and help me get better, but instead I was left with the acute distress at the time and long-lasting issues which are having a great impact on my ability to engage in therapy now as an adult. I have always veered away from blaming anyone, but actually right now I’m pretty f*cked off. It is completely unacceptable for a service’s failings to have left me with such a deep-rooted fear of trust, abandonment and neglect. I had, and still have, enough difficulties to deal with without this on top.

For now, I’m going to have to get myself through the next 3 weeks somehow. I logically know that the reasons for my therapist’s absences are out of her control, so I will do what I can to negotiate with the urges to disengage or self-destruct. If there’s one thing I’ve learnt about myself over the years, it’s that I have an ability to ‘get through’ things even if I’m metaphorically on my hands and knees and dragging myself along.

I’d be interested in knowing if this is a common experience of those who have accessed CAMHS? Is my experience unique? Have you experienced long term effects of poor care and treatment? “

We would love to hear about your experiences of delays or inconsistent support from CAMHS. Please get in touch with [email protected].

Guide to research about childhood brain conditions

Aims:

This guide provides an introduction to research and the research process. It also outlines some suggestions for finding good quality research and information.

Download Guide to research about childhood brain conditions PDF

First published 2019. This edition 2019. Review date 2022

Your response to the following statements will help us to make our information more useful. The questions relate to the resources that can be viewed on this page.

Joshua’s Transition: Part 3

Emma tells us about the challenges of transitioning from child to adult services. You can read part one here and part two here.

Well Joshua is now 18 years and 1 month old and so we survived his coming of age and it was a well celebrated birthday. He went to the theatre twice, he went to Donald’s for his actual birthday tea, he enjoyed afternoon tea with friends and he relished a family Sunday lunch with 20 members of his family. It is finally time to take his many birthday cards down and his giant helium 18 has only just collapsed.

So what has changed since he became an adult a month ago?

– The greatest change is that we have now nominated, and had approved, our adult respite provision. We heard last week that Panel had given the go ahead and so we are going to use the Easter school holidays for daytime introductions, before he works up to an overnight stay in May. We have a leaving party to look forward to at his current respite provision next month, during his final weekend, and I will certainly be needing my tissues then. So that is a huge hurdle reached and jumped.

– Joshua has always taken his anti-epileptic medication whole but in yogurt or mousse, so that it is easier to swallow and that practice has never been questioned. Now that he is an adult, we have to get an expensive Doctor’s letter to state that this is acceptable and that we, or the respite carers, are not trying to secretly administer medication against his will. Why should that suddenly become necessary now that he is over 18?

– I have to get used to calling Joshua ‘my young man’ rather than ‘my boy’ and I remind myself to talk about the ‘young people’ at school rather than the children, that is taking some doing but I will get there eventually.

– I am much more focused on the end of Joshua’s school days than I was before. I know that he will be there until July 2020, but that suddenly just seems around the corner to me. I know how quickly the terms fly by so after Easter we will be starting the summer term, so before we know it, it will be the long summer break then he will be back for his final year of school. I was in a Governor’s meeting last week and the head was talking about the 17 leavers next year and I didn’t hear anything after that, as I was so focused on Joshua being one of those leavers. That will impact not just on him but on me too, as I have developed several parent events while at school. I have already warned the coffee morning group that they need to recruit another baker for a year’s time, if the monthly event is to be sustained.

– The Continence Service changed Joshua’s ID code, without informing me, so that I could no longer order his repeat order of continence products as I was using his original ID number that apparently only applied when he was a child! His NHS number, passport number and National Insurance number are with him for life, but in their wisdom, he needed a new adult version for their system, which caused untold confusion and delays. They called up the other day to ask for an assessment at home, with Joshua and ‘his nurse’. I asked who his nurse was, as he has never had any nursing care other than the school nurse or nurses when he was in hospital. She did not know either who his nurse was and went away to find out, but that was several weeks ago and nothing has happened since.

– We have gained an additional social worker, as Continuing Health are funding Joshua’s adult respite and daycare, so we have a social worker from Health as well as Social Services now. We have met once so far, during a meeting at school but she will want an assessment of Joshua too in due course. I am not sure how long they will run in parallel but so long as they are joined up in their thinking and organised in home visits, then two heads should be better than one surely.

– Joshua is now a tall adult in an adult’s body, with facial hair – that he has had since he was 10 to be honest . But behaviour that was sweet and tolerated when he was younger, could be construed as being more threatening or inappropriate now. Joshua is very tactile, he loves to hug and he adores long straight hair, which he likes to stroke and flick. While a toddler stroking your hair might be regarded as being cute, it could be seen as more predatory in an 18 year old. But of course, in his mind, Joshua is still that toddler, just that it is now enclosed in a grown up body! I now think twice about where I take him to change him IF there is no disabled toilet facility, I have always bundled him into the Ladies with me if I am out alone with him, but now that does not always seem to be the best choice, but I am not sure how well Gents are set up as changing facilities.

There are also a few things that have not changed since Joshua turned 18

We have not yet been handed over to the adult neurology consultant or epilepsy nurse, that is due to happen at the end of April. So both will need to get to know Joshua’s history and how he reacts in appointments and we will need to build up confidence in them. Joshua still attends sixth form at the Special School that he has attended for the last 8 years, thankfully he can stay there until he is 19.

Joshua’s needs are completely unchanged: just because he is now considered legally as an adult, he is still virtually non-verbal, still needs personal care and he still has epilepsy. We still love him just as much as when he was a child and we will continue to make decisions on his behalf, in his very best interests. I detest the implication that after 18 years of care, we will suddenly become corrupt and try to spend all his benefits on ourselves and that our best efforts to keep him safe, could be construed as deprivation of his liberty. The onus seems now to be upon us to prove that we have his best interests at heart, where that was presumed to be the case when he was 17 and younger. Joshua is the same individual and we are the same parents, just trying to do our best to give our son the best life that we can.

You can read Emma’s past posts here and on her blog Ups and Downs Mum. If there are any topics you would like her to write about let us know in the comments.

Factsheet: Disabled Facilities Grants for Disabled Children in England and Wales

Aims:

This factsheet aims to give a short overview of Disabled Facilities Grants for disabled children. It provides information about what they are and will help you access the information, support and resources that are available in order to apply for them.

Download Factsheet Disabled Facilities Grants PDF

First Published 2019. This edition 2019. Review date 2022.

Your response to the following statements will help us to make our information more useful. The questions relate to the resources that can be viewed on this page.

World book day in our library

Thursday 7th March is World Book Day and we have lots of story books that are suitable for children of all ages available to borrow from our Library.

Young children

Sometimes by Rebecca Elliott

A colourful picture book for young children.

“Toby knows his sister Clemmie is very brave.  When she has to go to hospital, they both have to help each other face their fears.  Together they make hospital a much better place “.

Avery by Marta Altes

A lovely picture book for young children

“Avery is like other birds most of the time, but sometimes, feels a bit different.  But Avery is not alone”.

The Five of Us by Quentin Blake

An illustrated story for young children

“Angie, Ollie, Simona, Mario and Eric are five fantastic friends, each of whom has an unusual ability.  Disaster strikes on a day out to the countryside but, working together and combining their individual powers, the Fantastic Five save the day”.

5 to 8 year-olds

Ellie Bean the Drama Queen: how Ellie learned to keep calm and not overreact by Jennie Harding

A story explaining sensory processing disorder for 5 to 8 year olds.

“This cute children’s book offers insights into Ellie’s “dramatic” behaviours and provides easy sensory answers for parents and teachers alike.  Ellies’s story brings home what it’s like to grow up with sensory issues and helps a child to understand that he or she is not alone”.

Ian’s Walk A Story About Autism by Laurie Lears

A story explaining autism for children aged 5 to 8

“Julie can’t wait to go to the park.  But she’s not sure she wants to take her little brother, Ian, who has autism.  Ian does things differently.  At the park, he doesn’t like the tickle of a soft feather, but he loves to lie down and press his cheek against the hard sidewalk.  It’s hard for Julie to understand Ian.  But when he gets lost, Julie discovers that seeing the world differently, through Ian’s eyes, is the best way to find him”.

My Brother is Autistic by Jennifer Moore Mallinos

An illustrated story for siblings aged 5 to 8 who have a brother or sister with autism

“Having a brother with autism can sometimes be hard, especially when he freaks out in front of other kids at school.  It can be so embarrassing!  Maybe if the kids knew more about autism they’d stop teasing and making fun of Billy and just be nice”.

8 to 12 year-olds

Lulu and the Wishing Star by Pippa Fern

A heartwarming story about disability for children aged 8 to 12

“When Lulu and Sam make a wish to the Wishing Star, the young and trendy, guitar-playing fairy, Rock’n’roll-rockety-roo’ appears.  She grants their wish (well… sort of) but in her rush to catch a rock concert, forgets to leave instructions.  Can Lulu and Sam figure out their newfound powers in time to save their friend?”

Jumpin’ Johnny Get Back to Work! A Child’s Guide to ADHD/Hyperactivity by Michael Gordon

A fun story explaining ADHD for 8 to 12 year olds

“This story is told by a youngster who truly struggles to achieve, but doesn’t always meet with success and acceptance.  Although he moves through the day experiencing frustration and embarrassment, he still maintains his sense of humour and spirit of determination”.

The Panicosaurus by K I Al-Ghani

A story about managing anxiety for children with Asperger Syndrome aged 8 to 12

“Sometimes the Panicosaurus tricks Mabel’s brain into panicking about certain challenges, such as walking past a big dog on the street or when her favourite teacher is not at school.  With the help of Smartosaurus, who lets her know there is really nothing to be afraid of, Mabel discovers different ways to manage Panicosaurus, and defeat the challenges he creates for her”.

If you’d like to borrow any of these books, completely free of charge, contact our librarian on [email protected]. To find out more about the library check out our library page.