Stories from our wonderful families
In these unprecedented times, we are all trying to adapt to the huge changes impacting our everyday life. Every part of our daily routine has changed - often leading to increased anxiety and resulting in sleep problems.
This is especially true for children with sensory challenges. The disruption to routine, the overheard conversations and the change in everything familiar can have a great impact. Here are some stories from our wonderful families.
Harrison and Michelle's story
Michelle Dalgleish is a mum to three children, Harrison, Poppy & Emilia-Rose. Her aim is to raise awareness of their differences and challenges via the journey they have taken so far, in order to help other parents walking a similar path. She writes about her journey as an SEN mum at A Mother’s Instinct. This is her story.
The Fidgetbum arrived (nearly two years ago now) and gave us the gift of sleep. Harrison will snuggle down into the Fidgetbum as part of his sensory diet and, more importantly, it is only very rarely we have to give Harrison medication now to help aid his sleep.
Hello, my name is Shelly and I’m a mummy to three very different children. Two of my children, Harrison and Poppy, suffer with anxiety due to neurological conditions. Harrison and Poppy also have sensory processing difficulties , Harrison being a sensory seeker and Poppy an avoider. I’m going to share with you my experience with childhood anxiety and the many behaviours anxiety can manifest into.
Even though it is normal for a child to feel anxious or worried, for some children anxiety can affect their behaviour and their thoughts everyday. This level of anxiety can interfere with the child’s school, home and social life. Even though both Harrison and Poppy have anxiety it presents quite differently in each of them .
Harrison is 9 and was diagnosed in April 2020 with autism and ADHD after a six year battle for help. Prior to the diagnosis it had been noted on Harrison’s medical records that he was suffering with anxiety. Anxiety for Harrison is an emotion in which he feels nervous, afraid and really worried all at the same time. As a child, as you can imagine, it is very difficult to understand and explain the feeling of being anxious.
Harrison would express his anxiety in different ways, and often these behaviours would change with age. When Harrison was very small he would always be adamant on taking a toy with him when we went out. The toys Harrison would pick, were toys related to his current obsession. These toys, at the time, provided Harrison with great comfort. Harrison would also line his toys up in a particular way and not actually play with them, which is also a sign of anxiety.
As Harrison grew and his language skills developed, he started to describe to us the physical symptoms he was feeling. These physical symptoms included having a quick heart beat, having too many thoughts, needing to go to the toilet (a lot), having a headache, wanting to run away (which he has done) and feeling sick, with a crippling tummy ache.
Anxiety also caused Harrison to have other behaviours you wouldn’t automatically connect with anxiety. These behaviours included being very restless, unable to concentrate, to have impulsive reactions alongside hyperactivity. On top of all of the above, when Harrison felt anxious, worried or scared he also felt a sense of anger. This anger turns into physical aggression and is often followed by a meltdown. Harrison when in these moments is being driven by his brain which is in high alert. It is heart breaking to watch, exhausting and emotionally draining for everyone.
Children do not need to have a medical condition to suffer with anxiety. Every child is different and will present differently but here are a few common signs that a child maybe suffering with anxiety. The child maybe reluctant to try new things, they maybe unable to cope with everyday challenges, they may find it hard to concentrate, they may have trouble sleeping and eating properly, they may have anger outbursts, they may have unwanted and intrusive thoughts that make them worry excessively that bad things may happen and seek constant reassurance plus they may avoid everyday to activities such as going to school.
Talking of school, a lot of these symptoms for Harrison would appear in the morning before having to go into school. For the first four years of dropping Harrison to school I would have to leave him with an adult kicking and screaming for me to come back. On several occasions, I haven’t managed to get him in the car due to his level of aggression and even if I did make it to school staff members would have to help me get Harrison into the building. I’ve lost count how many times I drove away in tears. We have now learnt that Harrison had a fear of me dying which triggered this behaviour.
There really isn’t a black and white guide on how to help you child who has anxiety. It is even more difficult when you don’t have the support of those around you and of course they know your child best as they see them for an hour here and there. I accessed every course available and read many books to try and grasp a better understanding on what Harrison was feeling. All I wanted was for my child to feel happy again and to be excited about life. We currently stick to a regular routine, when possible, so Harrison is aware of what is going to happen without any diversions which can heighten his anxiety.
We play a lot of distraction games when out and about such as eye spy to help Harrison focus on something else. We have really worked on Harrison understanding these variety of feelings and have encouraged him to ask for help when he begins to feel overwhelmed. A worry monster is fantastic for younger children, have a google! It is important to try and keep calm yourself (easier said then done sometimes) , I constantly provide Harrison with reassurance and I make him aware I understand how he feels. Harrison suffers with low self esteem and needs constant praise in order to keep him motivated and his anxiety at a low level.
Harrison’s anxiety at night was just as troubling and he would have problems falling asleep. The first week back, going into year 2 Harrison was having a particularly hard time with his anxiety one night. Harrison had a very bad tummy ache and was feeling extremely sick. Within an hour Harrison was screaming and shouting in pain. I dialled 111 and after a few questions I was told to take him straight to the hospital with a suspected rumbling appendix. Once at the hospital we were seen very quickly by an experienced doctor. This doctor didn’t know any background history on Harrison but after the examination and speaking with Harrison she told us that Harrison had in fact experienced a bad anxiety attack. I have no words to describe how I felt knowing that what I had witnessed Harrison go through was due to anxiety, it crushed me.
We do how ever now call this his hospital tummy ache so we can define anxiety from having a bug. Harrison can also wet the bed when he feels particularly stressed as when he does fall asleep he sleeps deeply. Anxiety will also heighten Harrisons sensory processing difficulties and being a seeker Harrison will seek pressure on his legs and feet. I’ve lost count of the number of nights I’ve laid with him putting my legs on top of his to give his legs some pressure and to help satisfy his seeking needs. Harrison would also push his feet into me and paw me like a cat trying to get comfortable, neither of us would get much sleep but I wanted to provide Harrison with the comfort he was seeking. We did have a weighted blanket for Harrison but, as recommended, you can’t sleep with them
Harrison was put onto melatonin tablets to help him sleep. Melatonin is a hormone produced in the brain, mainly at night. It helps to prepare the body for sleep. Melatonin tablets are used as a sleep aid and the tablets add to your natural supply of the hormone helping you to get to sleep and improving the quality of your sleep.
This isn’t a long term solution and I was keen to find an alternative solution. Harrison’s bed time routine is the same each night, any deviation can lead to a meltdown. A tantrum and a meltdown are two completely different things, a child is in control of a tantrum where the child having a meltdown isn’t in control. Harrison’s meltdowns can last up to two hours and he is very physical, not only to us but to himself. I cant explain the pain of watching your child bang his head against the wall or bite himself. Harrison has told me I’m the worst mum ever, that he hates me and that he wishes that he was dead during these episodes, hearing this is never easy but I have to remind myself he doesn’t mean it.
I’m always on the search for new ideas that could help Harrison and one day, on Instagram, I came across Fidgetbum. Fidgetbum has been designed to help keep your child snug and cosy in bed by helping to prevent the blankets and duvets from falling off. It was noted that the Fidgetbum didn’t restrict movement but provided the child with a gentle pressure. My immediate thought was, could this provide Harrison with the sensory feedback he seeks at night? The Fidgetbum arrived (nearly two years ago now) and gave us the gift of sleep. Harrison will snuggle down into the Fidgetbum as part of his sensory diet and, more importantly, it is only very rarely we have to give Harrison medication now to help aid his sleep.
Anxiety is not restricted by age, and a child’s worries shouldn’t be discredited. I would like to leave you with a quote from the book The boy, the mole, the fox and the horse written by Charlie Mackesy.
“You fell - but I’ve got you”.
“Everyone is a bit scared,” said the horse.
“But we are less scared together.”
Kiran and Rishan's story
Kiran is a mum of three, and an Occupational Therapist. Kiran has been using figetbum to help her son, Rishan. This is their story.
"Rishan is 7 years old, he lives at home with us, his parents and his brother and sister. He was born via an emergency C-section. He enjoyed swaddling when he was a baby and continues to crave deep pressure proprioceptive feedback.
Rishan attends mainstream school, he has difficulty maintaining focus and works really hard using some strategies that I have shown how to help himself focus. I am a children’s OT and have been able to recognise that Rish has reduced proprioception, and because of this, finds clothing seams, materials uncomfortable. He also has auditory filtering difficulties, so finds filtering out background noises difficult. We do a lot of activities at home which involve deep pressure, traction and contraction of the joints to give him lots of proprioception.
He is a fun loving, loud and a loving boy.
Rish has never been a good sleeper, he sleeps in a bunk bed with his brother. His brother sleeps so well, but Rish wakes 4-5 times in the night kicking his legs. This usually wakes him up and he calls out for us. Before Rish goes to bed he carries out some traction activities (stretching on his bunk bed) and has a big bear hug. But this was not enough for him.
We trialled a weighted blanket with Rish, which was OK for providing that deep pressure which helps to release serotonin. However, Rish often kicked it off.
I met Mel at the OT show after seeing her product on Instagram. After seeing it at the show and later trailing a product at home with Rish, we couldn’t be happier. Rish is finally sleeping through the night, his concentration has improved and he is happier in the mornings."
Rishan's first weeks with Fidgetbum, during lockdown.
Sunday 23rd Feb 2020
I finally got around to fit the Fidgetbum sleep sheet, well Amit did. It was a little fiddly but to be honest once its on, its on! Hoping that this will be the magic cure to Rish sleep!!
Sunday 1st March 2020
Well I am shocked, Rishan is sleeping through! I hope I look back at this day and remember this! 1st of March when Rish finally slept through the night!
He finds it easier to get under his duvet and zip himself up.
Sunday 8th March 2020
Rishan has been waking up but just to undo the sleep sheet zip slightly when he is hot. But gets back to sleep straight after. Washed the sleep sheet for the 1st time after we fitted it and was easier to go back on when already zipped up.
Sunday 15th March 2020
Rish is now finding it easier to leave the sleep sheet zipped and just climb in. Before he goes to sleep, I have been encouraging stretches as you would in a body sock. He loves it! Great for proprioception! We have had a weird week as the coronavirus news has sparked a lot of questions with Rish. So, getting that sleep in is even more important.
Sunday 22nd March 2020
What an interesting week this week. We have been in isolation as a family, Rish has not been at school nor his siblings and we have been home schooling! Anxieties all around are through the roof. So we have been using emotional and sensory regulation strategies to help us. Rish has really benefitted from his good night sleep in bed. It is so important when we are anxious to have that serotonin released and for us to rest and recover. I have that comfort that I know Rish is getting that.
Sunday 29th March 2020
Not being able to go out has meant lots of mood swings. So we have made sure that Rish has had enough regulation breaks, keeps informed about the coronavirus via Newsround and gone to bed at decent times. In fact Rish looks forward to going to bed, to have his stretch under his duvet and sleep sheet then sleep.
Ollie and Danielle's Story
Firstly thankyou .. fidgetbum has literally changed our lives!
My son Ollie is 5 years old and has autism spectrum disorder and sensory processing disorder.
Ollie has never been a good sleeper its hard to remember a time when he was! Things had gotten so bad Ollie was awake usually from 1am till 6am (it varied but this was his regular time!) Myself and my husband suffered terribly, Oliver was often late for school and was too tired to function normally, our eldest son suffered as we were so tired all the time.
We had tried so many techniques, been on courses, had professionals involved and Ollie was on melatonin, nothing was helping long term. I saw fidget bum pop up as an advertisement on my phone and figured that it was worth a try.
If anything Ollie was such a wriggler in his sleep it would keep him warm! since day one of using fidgetbum Ollie has slept through .. it to.us is life-changing and has made a difference to our family in such a huge way.
Best of all in the daytime if Ollie needs to self regulate he will go and climb under his fidgetbum sheet to help him calm down. I cant recommend this product enough and am so grateful to have found it. xx
We're helping children with Sensory challenges.
The gentle pressure which the fidgetbum brings, soothes, relaxes and reassures the child. We're helping mums and dads, supported by Occupational Therapists, to make bedtime easier and help children to have a better nights sleep .
I have recommended fidgetbum for children who have sensory attachment related difficulties. These are children with an identified attachment disorder who present with sensory processing and regulation difficulties as a result of feelings of anxiety.
The fidgetbum has aided with children staying sleep and getting off to sleep, it offers both tactile and proprioceptive sensory stimulation. It is extremely soft to touch offering comfort, combined with snugness offering feelings of security and relaxation. The fidgetbum can also be used during the day to offer calming and relaxation
Clinical Specialist Occupational therapist
Advanced Sensory Integration practitioner
Trauma Informed Therapist
The following are reviews from mums who have been using fidgetbum to help with their children.
Happy Mum : Lesley
Happy Child : Mack, 7 years
I have struggled for years with my 7 year old autistic son and his sleep issues. We made the decision a few years ago with the advice of our paediatrician to have melatonin prescribed to him as it would normally take nearly 2-3 hours to get him to sleep EVERY night!
This definitely worked for him as it allowed him to decompress and naturally fall asleep however it didn't help him to remain in his own bed, so he was coming into our bed every night which then became earlier and earlier and if he wasn't allowed to come in then a meltdown would happen. The time came for something to change as he was getting bigger and the space was getting smaller, so we looked for sleep solutions that might help.
My son has sensory issues like most children on the spectrum and like lots of deep pressure. I had thought about a weighted blanket but he likes to be out of the covers and have his feet exposed. I have tried all sorts of duvet togs to see which one suited him but he would still end up outside the duvet.
I had seen some things on Facebook not realising that it may be something that would help my son to get back into his own bed again. So with the encouragement of Mel and some friends we decided to give it a go!
I chose the date that it would happen and low and behold my son is in his own bed and has been for the past 2 weeks. I found that the fidgetbum allows him to get some sensory feedback because of the stretch in the material but also allows him to have some coverage and warmth.
He personally prefers to be under the fidgetbum alone without the duvet underneath but once under he then likes to have the duvet on top. I think that this is only due to the warmer weather and in the winter he will have the duvet and fidgetbum. I am truly amazed at how well he is coping with it and loves being zipped up every night. I will be recommending this to all of my friends with autistic and non-autistic children who have sleep issues.
Fantastic job Mel on a fantastic product.
Happy Mum : Amy
Happy Child : Henry, 3 years
I am the parent of a 3.5 year old who has sleeping and sensory difficulties found in children with autistic spectrum disorder. Our son has not slept longer than 1.5 hours at a stretch regularly or consistently for his entire life! And us even less!
Over the years we tried sleep training, routines, magical CDs promising the land of dreams! White noise, sleep suits (our son refused sleeping sacks and until the past year a duvet) Having felt we had exhausted all options and ruined by sleep deprivation, we reluctantly requested Melatonin be prescribed. We saw an initial improvement for the first few weeks, which tapered off and then we were back to square one.
Due to the nature or my sons acceptance of all things 'new' I started looking for products and asking about other things we could use. I approached our sons occupational therapist, who suggested we tried fidgetbum as a product which might offer our son some pressure that would be comforting but not restrictive. THIS has been the answer for us!
After watching the instructional video (at least 20 times!) he understood and accepted the fidgetbum. It really helped him seeing other children demonstrating the product! THANKYOU!
Our son is sleeping for MUCH longer stretches and I can honestly say ..... Of all the money I have wasted over the years ...... This has made up for it! I had been considering a weighted blanket, but apart from being a lot more expensive, not as portable, washable etc - I know my son would have probably rejected it. I think he understands the fidgetbum to be part of his bedding, especially with the neutral colour, which was helpful for us.
I can't recommend this product highly enough!
Mel was really helpful, listening and responding to our requirements and her customer service was superb! I am already spreading the word - I never thought we would find anything that would help.
I would encourage any parent with a child with sensory processing difficulties to consider this product to be something that REALLY could work.
Happy Mum : Saffron
Happy Child : Tate, 8 years
Saffron talks about her wonderful son, Tate, and how fidgetbum has helped him at bedtime.
" I am so happy to have Fidgetbum supporting
Anna Kennedy Online and I think that their product is a fantastic idea to help children sleep better and stay snug and warm in bed! "
Anna Kennedy OBE
Our Friends (the professionals)
The gentle restriction which the fidgetbum brings, comforts children and helps them to relax. We're helping mums and dads, supported by Occupational Therapists, to make bedtime easier and help children to have a better nights sleep .
We have a number of resources and links below that may help you.
Sleeping challenges for children with Sensory challenges.
Guest Blogger : Lindsey Biel, Author and Occupational Therapist
Raising a Sensory Smart Child
By Lindsey Biel, OTR/L and Nancy Peske, foreword by Dr. Temple Grandin
The bestselling, award-winning book on sensory processing issues is filled with practical information and real-life solutions including:
Great sensory diet activities for kids, teenagers, and adults
Techniques for dealing with sensitivity to noise, touch, and other input
Solutions for brushing teeth, dressing, eating, sleeping, transitions and more
Parenting strategies and how to advocate for your child at school
Recommended equipment and toys, complementary therapies, essential resources
Here are a few pointers on sleep and sensory children from Lindsey ...
One of the best ways to help your child is to make sure he or she gets a good night’s sleep. Well-rested children are more attentive, have a more positive mood, and learn more quickly. Most experts agree that children between ages 3 and 5 need 10-12 hours of sleep while kids between ages 7 to 12 need 9-10 hours.
Unfortunately many children with sensory processing difficulties (and their parents!) do not sleep well. Exhausted children do not think, behave, and learn at their best, and being tired makes it even harder to deal with sensory challenges. Persistent sleep disturbances result in higher levels of stress hormones, irregular biorhythms, decreased attention and cognitive skills, and heightened overall arousal because the body compensates to combat sleepiness.
Children with sensory problems may lack adequate rest for many reasons such as because they:
are unable to lower the arousal level of the central nervous system in order to reach the state of calm required to drift off to sleep.
have trouble filtering out sounds inside and outside the house, whether it’s traffic or crickets outside or even the sound of a sibling breathing in the next bed or the next room!
can’t tolerate the sensation of sleepwear, sheets, pillows, blankets, and sometimes even the firmness/softness mattress itself.
have difficulty waking up from daytime naps which causes them to oversleep and then be unable to fall sleep again until very late at night.
emotional factors such as anxiety or anger, fear of bad dreams, or feeling left out of family activities, especially if there are older siblings who stay up later.
There are many theories and books on fostering sleep in children. I usually recommend Marc Weissbluth’s Healthy Sleep Habits, Happy Child. Sometimes parents need some extra help from a sleep specialist, especially if the child snores to rule out sleep apnea or other physical conditions that may be interfering with sleep.
Raising a Sensory Smart Child
By Lindsey Biel, OTR/L and
Nancy Peske, foreword by Dr. Temple Grandin
Loved and celebrated by parents, teachers, therapists, doctors and others, the new edition of Raising a Sensory Smart Child is a must-have volume for anyone who cares about a child with sensory issues.
For children with sensory difficulties-those who struggle to process everyday sensations and exhibit unusual behaviors such as avoiding or seeking out touch, movement, sounds, and sights-this groundbreaking book is an invaluable resource.
Sensory processing disorder, also known as sensory integration dysfunction, affects affects all kinds of children-from those with developmental delays, attention problems, or autism spectrum disorders, to those without any other issues.
Coauthored by a pediatric occupational therapist and a parent of a child with sensory issues, this updated and expanded edition of Raising a Sensory Smart Child is comprehensive and more helpful than ever.
For children with sensory processing issues, usually some fairly simple changes make a big difference in the quality and quantity of their sleep
For children with sensory processing issues, usually some fairly simple changes make a big difference in the quality and quantity of their sleep. Here are a few ideas:
Help set your child’s internal time clock. Have your child go to bed and wake up at the same time every morning, 7 days a week. It’s tempting to let kids stay up late and sleep late on weekends and vacations, but this confuses the body’s internal clock and can cause difficulty falling asleep well beyond the weekend or holiday.
Establish a bedtime routine. To enhance your child’s sense of security, stick to a predictable routine for getting ready for bed every night such as brushing teeth and washing face, cuddling up in bed, and then reading a book together. While it is standard advice to engage only in such relaxing, soothing activities at bedtime, it is possible that your child may actually require some intense vestibular and proprioceptive input before bed. This will take some trial and error. You may find that your child falls asleep more easily if, for example, he jumps on his mini-trampoline as part of his bedtime routine. For some kids, a bath is overstimulating just before bedtime. If this is the case, move bath time to the afternoon or earlier in the evening.
Don’t let your child go to bed hungry or thirsty. If needed, give her a light, nutritious snack before bed (and before brushing teeth). Milk and turkey contain L-tryptophan which helps induce sleep. Give just enough to satisfy but not so much that your child will definitely need the bathroom or a diaper change during the night. If your child insists on having a bottle to go to sleep, give him water only to avoid teeth problems.
Consider bedding and clothing. Use unscented laundry detergent and in general, avoid fabric softener because it leaves a residue. Make sure the mattress is not lumpy, too hard, or too soft. Most kids prefer all-cotton bedding and cotton or polar fleece pajamas with tags and labels removed and without elastic waistbands and cuffs.
Make the bedroom conducive for sleep. Use a night light if your child prefers one, but consider whether your child needs the room to be completely dark. Minimize environmental noise by keeping the house relatively quiet, using a white noise machine, or soundproofing the room. Make sure the room isn’t too hot or too cold. Consider what you can do to fix any distressing vibrations from an air conditioner or clanging from a radiator.
Avoid or reduce naps if possible because daytime naps often interfere with nighttime sleep. If your toddler is outgrowing his need for naps, limit nap length or eliminate them and get him to bed earlier at night.
Use the bedroom for sleeping only. By using the bedroom for playing and watching TV, the child may associate the bedroom with activities he can do when awake.
Certain medications and foods may interfere with sleep. Consult your pediatrician if your child is taking medicine (antihistamines, mood stabilizers, etc.) and his or her sleeping habits have changed. In general, avoid giving your child caffeine (chocolate, hot cocoa, ice tea, Coke/Pepsi/Mountain Dew) because it interferes with sleep.
You may also want to consult with your doctor about using a melatonin supplement, which is hormone that helps regulate sleep and wake cycles.
We're the charity dedicated to helping families with children with brain conditions discover a better life together.
Cerebra have developed a guide to help parents understand sleep problems in children with intellectual disability and what can be done to improve sleep. Part one describes common sleep problems in individuals with intellectual disability and how these sleep problems are assessed.
Part two gives a brief overview of sleep problems in specific genetic syndromes. Part three outlines some strategies which may help to reduce or improve sleep problems.
<< Click on the guide image to find it on our website