On Saturday 13th October 2018, my friend contacted me to say that she’d received a letter stating that Ruby-Rose does not meet the criteria for a Family Fund Grant. In the summer of 2018, after seeing Ruby-Rose several times I encouraged her family to apply for a grant after receiving 3 years of grants that had significantly made a difference for my eldest daughter, Amber (now 6.)
Since the age of 3 months, Ruby’s mother, Claire has been asking my advice as she noticed something regarding Ruby’s development, some may say that this is very young, but I can completely relate as parents, we are the experts on our own children.
Ruby has been seen by a great deal of professionals at her young age, she also received hospital care for Meningitis at 5 months old, this was an extremely worrying time for the whole family. Ruby has been seen by Health Visitors, GPs, Paediatrician, Physioterapist, Specialist Play, and staff at a local SEND school who are offering support as Ruby will need to attend this school when she teaches Nursery/Reception age.
Ruby has been assessed as having a cognitive age of 3 month old, she does not interact with her 2 sisters, to this I’ve witnessed on several occasions. She doesn’t respond to her name and has a great deal of sensory processing difficulties. On the whole, Ruby is a ‘Sensory Avoider’ she is startled by sudden movement, loud and unexpected sounds, has difficulty eating foods that aren’t soft/puréed and therefore has a very restricted diet. She is very tactile defendant, she doesn’t like physical contact and gets distressed, especially when being examined by professionals, such as a Physiotherapist, making it difficult to work with her.
Ruby is currently screams for hours on end and demands and needs around the clock care, she is also having sleep difficulties, finding it hard to settle at night.
Ruby is calmed via sensory equipment such as lights, we known this from when the family attend the ‘stay-and-play’ sessions at the local SEND school and they’ve also taken her to an ‘Autism and Additional Needs’ stay and play session locally. The huge barrier for Ruby’s family, is that the specialist equipment and toys she so desperately needs are very expensive, as you are well aware.
Ruby does not play with regular toys, as ‘Neurotypical’ children her age would, as they are not age appropriate due to her Global Developmental Delay (GDD.)
Ruby requires a calming space she can relax in when she becomes overwhelmed and goes into sensory meltdown. A place where her parents know she will be safe with toys she can not put in her mouth and hurt herself with.
As Ruby hates physical contact, her parents can not hold her to calm her, she doesn’t give eye contact and becomes distressed when doing day to day tasks with her such as feeding and changing her. As she does not sleep through the night, she will sleep for 15-30 minutes and wake up distressed, screaming headbanging to the point she is sick.
Claire, Ruby’s mum, can not work due to Rubys complex needs, and this why the family are struggling financially. All they want is to provide their daughter with the specialist toys and equipment that she desperately needs.
I’ve always been a huge advocate for the work that Family Fund have done for families, I’ve shared this via the parents support group I coordinate locally, to which Ruby’s mother is a member. My own family have had our photographs taken to use for Family Fund promotional materials.
Mum heart is literally breaking for this little girl and her family, I urge you to please re-consider your decision.
When I heard that the April theme for the Family Fund blog was ‘Happiness’ I was delighted as I really feel
that we’ve turned a corner in our household recently, it has been a year since my daughter, Lou, (5) was
diagnosed with Sensory Processing Disorder (SPD) and Hypermobility, and she is currently at the start of an
ASD assessment. When we first received the diagnosis, it was a tendency to look at what my daughter
can’t do. Gradually over the past year I have learned to ‘tune-in’ to my daughter’s interests and in turn, it has helped us as a family to really focus on what makes her happy, and learning to embrace her strengths,
and there are so many!
Via researching SPD I learnt the difference between ‘sensory seeking’ and ‘sensory avoiding.’ I soon
realised that Lou, on-the-whole, is a huge sensory seeker and does avoid in some circumstances, e.g. she dislikes sudden, unexpected and loud noises. Lou is constantly seeking sensory input which can make her appear ‘hyperactive,’ and has an inability to sit still. But via offering a ‘Sensory Diet’ at home, it allows Lou to get her daily sensory stimuli and we do notice improvements in terms of her
concentration and attention if her sensory seeking needs are met. (I have written a separate post about a ‘Sensory Diet’) here:
From my own experience in working with Early Years children I picked up many ideas of the sort of
materials and equipment for messy play, along with many ideas. I soon found that Lou thrived on this kind of activity so I went with this. From the age of 18 months she enjoyed the feel of running water into her hands, and if I put out a tray with sand and washing-up liquid in to make ‘Soapy Foam,’ she will usually
tip out the mixture onto the floor and explore the textures with her hands and her feet.
Play dough is a huge favourite with Lou, especially when we make home-made sensory dough that has
essences added such as vanilla, or dough that has been mixed with glitter or herbs and spices, Lavender was a huge favourite. Lou tends to ask for play dough every day, especially after school, she will hum to
herself whilst she’s squeezing and manipulating the dough, which I’ve come to realise is a sign of ‘self- regulation’ and that she’s receiving the sensory input that she has been seeking. Any activities that involve
paint do not stay on the brush as she absolutely loves to cover her whole hands in the paint and slide her hands across the paper, or table!
Sensory toys and equipment
We have created a specific sensory area for Lou, which she has named her ‘calm zone.’ The sensory toys
and equipment have a very calming effect on her, this includes:
• Bubble tube, rainbow projector, stars and moon projector,
• Coloured gel-droppers,
• Light-up sensory balls,
• Home-made sensory bottles that we filled and then sealed that can be shaken,
Vibrating neck massager
• ‘Treasure basket’ with everyday objects that includes a variety of textures,
• Musical instruments,
• A ‘Peanut’ ball, like a Yoga ball that is peanut shaped,
• ‘fidget’ toys such as a giant ‘Tangle.’
• Soft toys and books, soft rug and blankets,
• Fairy lights.
Lou has free access to this area throughout the day and our hope is to help her recognise when she
needs to take herself off to the area to self-regulate before she gets to the point of a ‘sensory overload.’
There is also other sensory equipment that we have found helps to calm Lou, and in turn makes her
happy, this includes our most recent addition of a ‘Weighted blanket,’ that includes a pattern of her favourite character – ‘Princess Poppy’ (From the Trolls movie.) Lou has loved deep pressure since she
was a newborn and only settled if she was swaddled. The deep pressure helps to calm her if she’s anxious
or has had a ‘sensory overload,’ sometimes she will just like the comfort of the feel and weight of the blanket.
Lou has always been a huge lover of ‘White Noise,’ when she was a baby I had to download a ‘White
Noise’ app onto my mobile phone, with the sounds of a Hairdryer or Hoover, sometimes she prefers the
feel of the warm air coming from the Hoover, and not so keen on the noise, and therefore puts her ear
Lou is a huge outdoors girl! She gets so much out of being in the garden or out at the park, she gets so
much from the ‘Forest School’ sessions that her Pre-School provided and that her current school provides
once a week. Lou is calmer and happier outdoors, this environment provides her with so much sensory
seeking input and stimuli, she makes a bee-line at our local park for the ‘Pendulum Swing,’ and likes to spin
and hold her head back to gain sensory input. She is happiest when covered in mud, the messier the
better, and is happy to climb and jump off equipment, she really has no fear!
‘Special Interests’ make Lou happy.
Lou has certain interests that engage and motivate her and make her very happy. At the moment, she
loves to collect ‘Shopkins’ figures, she knows all of their names and arranges them into groups, she can tell
people facts about the various characters. Lou will watch ‘Toy Reviews’ on the tablet and then do her
own toy review with her own toys! Even putting on an American accent and saying “Hey guys, today we’re
reviewing…” Lou tends to have a film that she is interested in and will watch the same film over and
over and then will change and repeat with another film, she started watching the film ‘Rio,’ then moved
onto ‘Frozen,’ and now the ‘Trolls’ movie. Currently we are all about the Trolls, she has the movie, the
soundtrack, T-Shirts, Pyjamas, sticker books, plastic figures, watch, pencils, you name it, she has it! I recently tried to play Lou some classical music to help calm her, but this didn’t work, until I played the
Trolls main theme tune, and she quickly calmed down after a sensory overload! I have sometimes experienced times when children are stopped from talking about their special interests but I find from experience, that it is important to embrace children’s special interests as you can really reach them on their own level.
In the past few months Lou’s love for Lego has developed, she now has several Lego sets and I realised recently that she gets so much from putting the Lego bricks together as the ‘click’ in itself gives sensory feedback.
Lining things up and numbers make Amber happy.
This is something that we’ve recently noticed, lining up the smaller characters that Lou collects, especially toys, but also items like household coasters, bathroom products and foam floor mats. This process we have found helps Lou to self-regulate, especially after a busy day at school. Lining up allows her to gain back some control, she likes to see objects and toys all in line, neat and tidy and this makes her feel happy. Lou is also a huge numbers fan, she can recognise 2-digit numbers now on sight, especially the numbers of the stickers for her Trolls sticker book! Lou also thrives in mathematical activities that include shape and repeating patterns.
I know that there are so many challenges to having a child with additional needs, we still have some really challenging days, but around a year ago I felt completely lost, until I started looking at the many positives that my child has, rather than focusing on what she cannot do, and learnt to embrace these positives, and in turn learnt more about my child and about myself. My love has grown for messy and sensory play with my child and I am now completing an online course in Play Therapy.
My girl is wonderfully quirky, and loves to make people laugh, she naturally makes people around her happy, and seeing her happy warms my heart.
Challenging behaviour and meltdowns are something that I deal with every day. After working in Childcare for 12 years, (6 years with children with additional needs,) nothing could prepare me for dealing with my own child’s challenging behaviour in the home environment. I have soon learnt that the relationship I had with my pupils is completely different to the emotional connection that I have with my own daughter, Amber (4.) I have learnt that certain strategies that may have worked with the children I looked after do not work with Amber.
I quickly had to learn the important huge difference between a ‘temper tantrum’ and a ‘meltdown.’ As Amber has Sensory Processing Disorder (SPD) with traits of ASD and ADHD, she can experience ‘Sensory Overloads’ and this often results in a ‘meltdown.’ This is when I describe that she is no longer in control of her emotions, I’m often describing that Amber is neither ‘naughty’ or ‘spoilt,’ these are meltdowns are occurring because there’s a sudden loud noise, a change of routine or she has become overwhelmed in a supermarket from the noise, the lights, the sheer volume of people. Amber has difficulty recognising that she’s feeling overwhelmed and therefore will display her feelings via kicking, hitting, pushing, throwing items, pushing her younger sister over, pulling stairgates off walls, thrashing herself about, banging walls or doors, spitting, screaming or shouting.
At 18-months-old I first noticed that Amber was a ‘sensory seeker,’ she would actively seek out anything that would provide a sensory input, for example, she enjoyed running the taps in any bathrooms and feeling the water run through her hands. I found that her temper tantrums were frequently and I was constantly told that this was “normal for her age,” and that she would “grow out of it.” By the age of 3 she became a big sister and I had prepared myself for her behaviour to become more challenging, the advice I was given was that this should only be a ‘stage’ and that after she was used to having a new baby in the family, then her behaviour would improve, however it didn’t, and as time went on she became increasingly worse, and would display on the whole as compliant in her Early Years setting but extremely challenging at home, she would target her baby sister by pulling her legs and trying to tip over her Moses basket, the jealousy she felt toward her baby sister was quite extreme. By the age of 4 I started to recognise certain things that Amber didn’t like, that she would avoid, for example, physical contact – she would only give out cuddles on her terms and when she did they were very tight cuddles! She also became anxious around unexpected loud noises like motorbikes when outside and she could hear aeroplanes and grass cutters long before I could! It was around her 4th birthday that I would say that Amber’s ‘extreme meltdowns’ started. These were sometimes around 10 times a day and some would last over an hour, and I found it incredibly difficult to deal with as it was such unknown territory for me. The main triggers for a meltdown are:
• Unexpected loud noises,
• Changes to routine – finds school holidays very difficult.
• Wanting something that she cannot have – usually centred around food, as Amber cannot tell when she feels full.
• Public places – usually indoors – supermarkets, libraries, sports halls, swimming pools, cinema, theatre.
I can usually gauge when Amber is on the verge of a meltdown, she becomes extremely restless, will talk quickly and will jump, clap her hands in front of her face or try and climb onto anything she can to jump off.
I use a range of strategies to help avoid a possible overload:
• Visuals – to display routines of what is happening during each day, traffic light system – to help Amber identify if she needs to free play (green,) find a calm activity such as playdough (orange,) or go to her ‘calm zone, (red.) I also use individual cue cards and fans, e.g to show ‘kind hands.’
• Always carry Ear defenders – in case of loud noise, e.g. at the train station.
• Listening to fears, worries, frustrations and what makes her angry – talking through exactly what the problem is if she is willing to share. This is a recent strategy that has worked once I noticed more challenging behaviour days before a Halloween party, we talked and Amber said “Mummy I’m scared of Halloween.” I could then address this to avoid an overload.
• Keeping calm myself – this is easier said than done! It is one of the most difficult things that I’ve ever had to go through and I’ve always been told that I’m a calm person but it’s very difficult to handle when you are being challenged daily, and you’re the main person that your child outlets with, there was a time when I felt completely hopeless and my self-confidence took such a knock. But staying calm allows situations to be diffused, if my voice is raised then Amber will also raise hers, but If I remain calm, then she calms quicker.
• Avoiding the word “No” – we use strategies to avoid demands on Amber, if she hears the word no, she can become even more angry. We phrase instructions carefully, for example, when getting dressed for school: “You put your socks on, or I can help.” This can be quite challenging for us to think of at times!
• Distraction – Amber thrives on sensory and messy play experiences as part of her ‘Sensory Diet,’ If I plan experiences when she’s at home, such as playdough, sand and water play, foam play, etc she is satisfied in terms of her ‘sensory seeking,’ and I find that her level of concentration is much higher whilst engaging in this type of play.
I have learnt over time that there are specific strategies that can help during and after a meltdown:
• Breathing exercises, e.g. lying down and counting to 10 with a teddy on her tummy. Smelling the flower (breathing in,) and blowing out the candle (breathing out.)
• Calm area – a specific area of the house, including blankets, cushions, bubble tube, sensory toys.
• Wrapping up in a blanket – Amber responds to a ‘weighted blanket,’ and likes to feel safe and contained.
• If in full meltdown mode, (as I haven’t had up-to-date restraining training,) I have been advised to ensure that Amber is safe, e.g. that she cannot bang her head and that I leave the room with her younger sister for safety, but keeping Amber in sight.
• Offering a reassuring cuddle once a meltdown is over, to talk about what happened later, once she is much calmer and try to establish what the problem was.
• Rocking and cuddling tightly can help to calm her.
I felt completely lost after having my second child when Amber’s challenging behaviour peaked, I would have appreciated someone to advise me that everything would be alright. Now I try and help other parents as much as I can, this is one of the reasons why I started my Blog in March 2016, I’ve always said that if I could just help 1 other person it would be worth it.
My top tips for parents who experience challenging behaviours from their child are:
1. Connect with other parents – via social media support groups and local support groups. I attend a parent’s support group, for those that have children with additional needs, which is run from my local children’s centre I have also joined a local support network where there are meet-ups for parents to connect and for the children to interact. This is such a huge support for both myself and my partner, to talk to other parents who know where we’re coming from and have been through similar experiences, this allows us to share tips and ideas and provides a reassuring emotional support.
2. Research – time is precious and we lead such busy lives, but I’ve found it so useful to research the reasons behind challenging behaviours in children, via internet searches and reading various books. There is a fair amount of reading material out there and I’ve found a lot of helpful books that offer information on dealing with anger in children. I have soon learnt that ‘there is a reason for every behaviour,’ and this has put it all in perspective for me, to stop and ask myself: “Why is this particular behaviour happening?”
3. Never be afraid to ask for help and support – in the beginning I saw asking for help as a weakness, I was embarrassed after working in childcare and that I was struggling to cope with my own child’s behaviour at home. But once I contacted my local children’s centre, and was offered Family Support this turned our whole family life around. Our family support worker made weekly visits to offer advice and strategies to support us to deal with the challenging behaviours that Amber displays. Without this vital support our whole family life would have suffered.
4. Always carry a ‘Fiddle’ bag or box wherever you go! This has prevented many meltdowns, especially whilst out and about, providing a distraction and something to focus on if I recognise the signs of Amber becoming restless, or on the verge of a sensory overload.
5. Believe in yourself! – As someone who’s parenting strategies have been constantly scrutinised, this has really knocked my self-confidence, as Amber is a very good masker of her difficulties and she tends to offload mainly with me, I’ve now learnt that this is because she feels most safe with me and that it is nothing that I’m doing wrong. Believe that you are doing a good job. Take a deep breath and try to offer yourself little ‘brain breaks,’ I go upstairs for 5 to 10 minutes and sit quietly in a dark room once Amber’s daddy returns home from work. It is very difficult to find time for me, bit this is so important.
When I heard of the theme of ‘Our Support Crew’ for October’s Blog theme, I was excited to celebrate the people that have been there for us as a family, especially over the past 2 years. I am often telling the people who support us how grateful I am, but it’s also great to celebrate these wonderful people in a Blog post.
My parents live a 5-minute drive away from our house, as both myself and my partner, Paul are unable to drive (for various reasons,) I am so very grateful that my dad is always on hand to help out with travelling to one of the many appointments that I have to take Amber to. This may be for a hearing test at our local hospital, which is 8 miles from our house, Occupational Therapy appointments, and even though Amber’s Paediatrician appointments are at our local medical practice, its difficult for me to keep Amber calm with her younger sister of 18 months present also. My dad will drive us to these appointments and then supervise my youngest, Maisie whilst I go in with Amber. My parents are extremely understanding of Amber’s difficulties, whenever I receive information or reports I place them in a folder and often photocopy for my parents to refer to. They are very good at carrying on certain routines, if Amber goes over for the day, or stays for a few nights, for example by using her visual timetables or sensory toys if they can see she’s getting a bit overloaded. Apart from Amber’s daddy, my mum is the only person that has witnessed Amber’s extreme sensory overloads, this is because Amber is very good at holding her overloads in. I have found that Amber will only display extreme meltdowns with those whom she is most comfortable in the company of – one being my mum. My mum has 25 years Early Years’ experience, she is the calmest person I have ever met and is so brilliant with Amber, she has taken on some ‘Sensory Diet’ activities when Amber goes over, such as making sensory play dough.
My sister is also Godmother to both Amber and Maisie, she too has helped out with appointments and will come over to play with the girls to give me a little ‘brain break!’ Their Aunt and Uncle are extremely good at playing role-play ‘shops,’ which is currently a big hit with Amber! My sister recently stepped in and took over when I couldn’t move due to Sciatica in my back, changing and dressing and giving the girls their meals.
My cousin, who works in childcare, has a great rapport with Amber, only last month she drove us to a local ‘messy play’ session which Amber thrived on.
As I wrote in a previous Family Fund Blog post, Paul’s dad’s family are a fantastic support when we take the girls to visit them in Somerset. Even though there is distance, and we would love to live closer, the support and advice is there via weekly ‘Face Time’ via mobile phone with Paul’s sister and niece, and a weekly phone call to Paul’s dad keeps him up-to-date with all our going’s on! We find that Social Media sites allow us to keep up-to-date even though we live 1 ½ hours apart.
Friends and neighbours:
We have a fantastic network of friends and neighbours, this network grew once we moved to our current home in August 2015, and I got speaking to some of the other parents at Amber’s Pre School. Many of these friends are regularly kept up-to-date with Amber’s progress, before meeting these lovely people, I was extremely anxious about taking Amber on a ‘Play-date’ in case she was to hurt another child. My friends have been so encouraging and have taken note that Amber’s play-date time limit is around 2 hours, and will be aware of this if Amber starts experiencing sensory overloads. One of these wonderful friends lives only 2 doors away and is Maisie’s Godmother, and such a great support to our family. Friends have taken us on trips to local parks, animal parks, our local countryside centre and we’ve had a lovely walk through the woods together, which Amber – being an ‘outdoors’ girl, absolutely loved! Our friends are very understanding of Amber’s difficulties and many have reported how she makes them laugh with her infectious personality! When my parents were away on holiday, one friend even took us for one of Amber’s hospital appointments, even though they have children of their own, they always find the time to help us, and for this I am eternally grateful.
When I first recognised that Amber had some difficulties, we had quite a mixed response in terms of support when she was around 2 years old. Often our parenting was scrutinised in the beginning as things hadn’t been looked into long enough and a great deal of Amber’s overloads were put down to the ‘Terrible Two’s’ which I did have my doubts about. Because Amber’s behaviours at home were difficult past the age of 2, then 3, then 4 we knew that something needed to be looked into. We were extremely lucky to move back to the area covered by Amber’s Health Visitor from when she was first born, who knew our family well. When I explained the situation to this Health Visitor, she was the first professional who actually said to me: “I believe you.” She witnessed Amber at home, climbing onto furniture, not settling, continually being on the move and sensory seeking. She then arranged for a referral to an Occupational Therapist.
Amber had attended a few different childcare settings before our house move in August 2015, at first I was reluctant to move her to yet another setting, but the house move was a necessity as it was vital that we moved from our first floor flat to a house with a garden to benefit Amber’s love of the outdoors and to allow her to burn more energy. I was so glad that we made the move to her Pre-School as a member of staff first introduced us to the SMILE (Sensation Movement Interaction in Life Experiences) Centre in Malvern, Worcestershire which provides Amber with so much support in school holidays. The Pre School leader was the first practitioner to mention Sensory Processing to me, as I’d only come across 1 child in my 12 years in Education. This practitioner organised monthly TAC (Team Around the Child) meetings to ensure that Amber received the best level of support from Pre School and support us as a whole family also. The Pre-School leader ensured that Amber’s transition over to school was smooth via an in-depth hand-over and we are very grateful to the school’s Inclusion Manager who, in only 3 weeks of Amber attending, has already offered a tremendous amount of support and advice.
Without our ‘support team’ we would be utterly lost, sometimes all that is needed is a listening ear, especially if it has been a tough day, it’s very easy to get caught up in our own family ‘bubble’ at home, and letting people in to help and support only makes us stronger.
This is Amber she is 4 years old and has Sensory Processing Disorder (SPD) with traits of ADHD and Autism.
Amber has a younger sister Maisie who is 18 months old and lives with Mummy – Nicki and Daddy – Paul in a village in Worcestershire. Amber is a lively little girl who’s always on the go, she finds it difficult to control her emotions and frustration. She requires a calm place if it all gets too much at home. Amber is a ‘Sensory Seeker’ and therefore will thrive on all sensory experiences, the messier the better! Family Fund provided Amber with a grant for Sensory toys and equipment from Learning SPACE and sessions at a local multi-sensory centre called SMILE (Sensation Movement Interaction in Life Experiences) at ARCOS (Association for Rehabilitation of Communication and Oral skills,) in Malvern, Worcestershire. We have noticed a marked improvement in Amber’s ability to cope with sensory overload, frustration and anger and will use the toys and equipment in her calm place.
Preparation for starting school this September.
Amber has just finished a year at our local Pre School which she throughly enjoyed, and this enabled her to start to build friendships ready for school. I’m not sure who’s more nervous about Amber starting school – Amber herself or me! Coming from an education background, for the last 12 years I have been so used to receiving a new class every September, it’s a whole new experience for me to be on the other side! Since May 2016 there has been input about starting ‘big school,’ which has been important for Amber to prepare her for the change that is about to happen. However, we have noticed a spike in Amber’s behaviour at home and in particular, her bedtimes have been disrupted.
Amber thrives on structure and routine, she gets up every morning and asks “what are we doing today?” We use a visual timetable to inform her of what is happening each day. Amber likes being around other children and many adults in an education setting, in order to prepare her of the change in setting, adults and surroundings, her Pre School made a special key ring with pictures of the staff, various rooms and areas of the school. Therefore we have been looking at these pictures frequently over the holidays and have been talking about it together.
We were impressed with the amount of transition visits Amber’s new school had arranged for their new intake. Some of these sessions I attended as well and I could already see that the classroom is going to suit Amber due to the sensory play opportunities on offer and a large outdoor space. I was so impressed when the school’s Inclusion Officer said that Amber will have a specified quiet area of the classroom with a basket of sensory items if she gets a bit overwhelmed. The key here was to arrange a meeting before Amber starts the school and this will then be followed up with a multi – agency meeting at the school during her second week. The class teachers have arranged a home visit for the first week of term to allow them to see Amber in her home surroundings, which I think is so important as Amber does tend to behave differently at home than she does at any educational setting.
Amber is nota fan of ‘itchy’ materials as she calls them, nor socks as she takes them off everytime at home. Amber hasn’t worn a skirt since around the age of 2 and she isn’t keen at all on tights, again calling them “itchy.” We are lucky that trousers are permitted for girls to wear, so I ensured that I bought ones that are of soft and light texture. She may request to wear a skirt if she sees that other class – friends are, so I’ve ensured that I have both options. Amber is also not keen on labels in her clothes – I’m the same and can remember an itchy label in my neckline once affected my whole day at school. I will therefore cut the labels out to avoid any discomfort.
Amber has a staggered entry into school for the first 2 weeks which will allow her to stay for the morning then experience a week with lunchtimes before starting full time in the 3rd week. I can imagine that Amber will be very tired in her first few weeks whilst adjusting to the change, so will be be prepared at home when she returns and I would think that she’s going to require quite a lot of time in her ‘calm area’ where she has Sensory toys, bubbles tubes, etc.
We are excited about this new experience but you always have in the back of your mind – will everything be ok? But we’re luckily to have such a supportive team already at the school to aid the process.
We can’t wait to take that all important ‘First Day of School’ photo – my mum still has mine! Daddy has even taken the day off to share the experience!
This is Amber she is 4 years old and has Sensory Processing Disorder (SPD) with traits of ADHD and Autism.
Amber has a younger sister Maisie who is 17 months old and lives with Mummy – Nicki and Daddy – Paul in a village in Worcestershire. Amber is a lively little girl who’s always on the go, she finds it difficult to control her emotions and frustration. She requires a calm place if it all gets too much at home. Amber is a ‘Sensory Seeker’ and therefore will thrive on all sensory experiences, the messier the better! Family Fund provided Amber with a grant for Sensory toys and equipment from Learning SPACE and sessions at a local multi-sensory centre called SMILE (Sensation Movement Interaction in Life Experiences) at ARCOS (Association for Rehabilitation of Communication and Oral skills,) in Malvern, Worcestershire. We have noticed a marked improvement in Amber’s ability to cope with sensory overload, frustration and anger and will use the toys and equipment in her calm place.
Our experiences of bedtime and sleep.
From 6 months old Amber slept through the night from 7pm until 7am, we couldn’t believe we could be this lucky after talking to other families that experience sleep deprivation. There had only been a few occasions where Amber had woken in the night and these occasions were usually down to a bad dream or an allergic reaction as Amber is intolerant to dairy and egg.
This was the case until only a few months ago, when Amber started refusing to go to bed and would do anything she could to gain our attention and prevent herself from settling and falling asleep. We have put this sudden change in routine and her being unsettled down to being aware that there’s a change coming from ending Pre School to starting ‘big school’ this September. As a family we’ve found the last month extremely challenging because some nights Amber won’t settle and fall asleep until 9pm and no matter what time she goes up bed she wakes up at 5am regardless, in an extremely spritely manner! Sometimes she’ll wake up at 3am and refuse to go back to sleep and we have to bring her downstairs as she’ll make noise to wake her sister or our neighbours. This is why Amber cannot yet share a bedroom with her younger sister, as Maisie would be woken frequently. We as a family, are all affected with such early starts, especially Amber’s daddy who works a full time. It makes for a very long day and it often feels like it’s the afternoon and we’re still only at 10am! From around 4pm each day Amber will start to get tired, from this time until bedtime is a tricky time, as it’s a battle to get the routines of meal, bath and bed into place when Amber is so tired.
We have tried many methods to help make the bedtime routine run more smoothly and reduce Amber’s meltdowns:
● Reward charts and stickers – this is the first method that we tried with advice from our local children’s centre we used a visual sheet with pictures of getting Pyjamas on, brushing teeth, getting into bed and then saying good night. A sticker was awarded for each stage that was completed. This worked for quite a while but Amber lost interest and stickers didn’t motivate her as much as when we started. She started to run around to avoid getting ready for bed.
● Lights on, lights off – Amber dislikes the dark so we’ve tried keeping the main light on for her, to then using a lamp. She struggles more in the summer months saying “but it’s not bedtime, it’s sunny!” We now use a black out blind. Amber responded so well to the addition of a colour-changing bubble tube that projected on the walls and ceiling and also a ‘Rainbow in my room’ projector. Due to recent meltdowns, these have been relocated to Amber’s ‘calm zone’ under the stairs as we couldn’t risk these items being broken.
● Classical music – we tried using a CD player with a classical music CD and also lullabies from a phone App called ‘Sleepy Sounds,’ again this worked for a time and Amber will decide on the night if she wants the CD player or not.
● Less distractions – we’ve had to simplify the layout of Amber’s bedroom as it was filled with toys, we felt she may be over-stimulated at bedtime, she now has her bed, a chest of drawers and a tent, including some soft toys. Amber gets frustrated and throws any item she can get her hands on, so now she only has access to soft toys at bedtime.
● Extra tall stair gate – I felt really bad when having to install a tall stair gate, I didn’t want Amber to feel ‘caged in,’ but for the time being this is essential to ensure Amber is safe. She was able to run around freely upstairs and would also wake her sister up, and I’d find her inside the cot, she was also able to access our landing and I was worried she would climb the normal sized safety gate and hurt herself. We’ve had to secure this to the wall as she was able to pull the pressure fittings straight off the wall! She really is very strong! We’ve also had to remove her door from the room as she was banging it against the wall in process and made a hole in the wall!
● Being brave enough to leave ! This has been my biggest hurdle, I hate it when my children are upset, but after advice I received we had to make a choice whether to commit to continually having to go back upstairs to settle Amber or whether to leave her and allow her to settle naturally. What we’ve found is no matter how difficult it is, and when it pulls at your heart strings, it is working for us to allow Amber to settle herself, we have spoken to our neighbour to explain and they are understanding of the situation. Amber will call “mummy” or “daddy” for a drink, to go to the toilet, for a story – even though she’s had her specified 1 or 2 stories, for a cuddle, etc – any method to get us to return to her. She is now learning that once we’ve said goodnight then she should try to relax and settle.
● Being clear on how many stories/songs. I took the advice of our local children’s centre here again, and we have a set rule that if Amber has got dressed for bed without any problems then she will have 2 stories, if there’s been some tricky behaviour then she will have 1 story. I recognise the importance of reading at bedtime and this rule ensures that Amber always gets at least 1 story per night. Some nights this routine works better than others, if she’s really tired she will fall asleep whilst in reading or singing songs from her favourite nursery rhyme book. But if Amber isn’t very tired we can get protests for more stories or songs, I did start to sing Amber to sleep but it only worked a few times and I was spending a great deal of time in her room in the evenings.
● Benefits of spending time outdoors – on the days that Amber has spent a lot of time outdoors, particularly if we’ve been out for the day, we find that the fresh air does make her more tired at the end of the day, especially if she’s been running around all day and has burnt lots of energy!
We recognise the importance of having time to ourselves as parents because our days are very full-on, it’s so beneficial to wind down during the evenings.
I’m unsure how long the unsettled bedtimes will carry on for, but it’s highly important that both myself and Amber’s father work as a team and support each other throughout the routine. We hope that the unsettled bedtimes will reduce once Amber is familiar with her new school routine. Only time will tell.
This is Amber she is 4 years old and has Sensory Processing Disorder (SPD) with traits of ADHD and Autism.
Amber has a younger sister Maisie who is 15 months old and lives with Mummy – Nicki and Daddy – Paul in a village in Worcestershire. Amber is a lively little girl who’s always on the go, she finds it difficult to control her emotions and frustration. She requires a calm place if it all gets too much at home. Amber is a ‘Sensory Seeker’ and therefore will thrive on all sensory experiences, the messier the better! Family Fund provided Amber with a grant for Sensory toys and equipment from Learning SPACE and sessions at a local multi-sensory centre called SMILE (Sensation Movement Interaction in Life Experiences) at ARCOS (Association for Rehabilitation of Communication and Oral skills,) in Malvern, Worcestershire. We have noticed a marked improvement in Amber’s ability to cope with sensory overload, frustration and anger and will use the toys and equipment in her calm place.
Amber first took an interest in technology, particularly our tablet, at the age of 3. A few people who saw her use it would say “she’s very good at using that, better than me!” And others in discussions would say that tablets aren’t suitable for young children as they can become addictive and cause over-stimualtion, especially if used at bedtime. I have also had a love of technology from when I bought my own PC complete with ‘Windows 2000’ and ‘dial-up’ Internet! I think Amber follows me with her love of technology, I must admit throughout my life I’ve found it easier to relate to a screen than have real conversations as I’m quite anxious in social situations and so is Amber already, what I’ve had to teach myself over the years, and what I want to instill in my child, is to have a healthy balance and therefore we have set times of the day and set periods of time that Amber can access our family tablet. I want Amber to be able to be confident in social interactions.
Times of the day when a tablet is used:
Amber uses the tablet after she’s dressed and ready for school, if I leave her to free play with other toys she is always distracted by her younger sister and will rough-house with her and I simply cannot get any belongs together to get out of the house. If Amber is focused for 20-30 minutes on the tablet I can ensure that everything is in order and we can get out of the door reasonably on time!
As Amber holds in her sensory overloads all day whilst she’s at school, once we reach home she will explode and release all of the overloads from her day, often resulting in meltdowns where she can be physically aggressive, shout, scream, run around the house, jump off the furniture and rough play with her sister. The only method I have found to allow her to focus and stay calm is to offer the use of the tablet. Without the tablet use at this time I’d be unable to prepare an evening meal for the 2 children.
I had trialled using the tablet to calm Amber at bedtimes, as we currently have a major issue with getting her to bed, but this hasn’t worked for us as I do find her brain is too stimulated and she will stay calm, but still won’t go to sleep! If the battery runs out we’ve had aggressive outbursts and throwing any item she can find in protest.
Protecting our device.
At present we only have 1 tablet for our family if 4, and I use it a lot in the evenings. Amber doesn’t realise her strength and can be quite heavy handed with the Tablet, therefore we have added a strong screen protector and a large rubber case.
Apps that we have found Amber responds well to.
– CBeebies Playtime App.
This is a very popular choice as it includes many games and activities from Amber’s favourite CBeebies characters, Amber particularly enjoys the Topsy and Tim game. It is bright and cheerful for young children.
– Read with Biff, Chip & Kipper App.
Amber throughly enjoys reading stories and this App supports early reading that she’ll experience from September, in Reception class. You can buy more stories.
– You Tube Kids App.
I was a bit wary of Amber using the full version of You Tube as even though we have a strict Internet family filter – I found that some of the content was unsuitable for children of Amber’s age, she was watching a very odd video of Spiderman marrying Queen Elsa! And absolutely endless videos of ‘Surprise Eggs!’ I found the App called ‘You Tube Kids’ and was relieved that Amber can access her favourite TV programmes, Such as Paw Patrol and Topsy and Tim, and we’ve also used the search facility to find nursery rhymes for a music session at home.
I can see that there are both advantages and disadvantages to allow your child to use a tablet or other device, we haven’t reached the age of ‘gaming’ yet! I remember not being able to put down my ‘Nintendo Game Boy’ when they first came out!
This is a topic that is close to my heart, Facial Palsy UK completes research projects which aim to create a better future for everyone affected by facial paralysis. As I get older I may enquire about surgery, as my skin loses its elasticity. Please see here for more on my personal story: http://wp.me/p7BVlE-1m
This is a subject that this very close to my heart. My closest friends and family know why I am passionate for this cause. It doesn’t matter if your 3 or 33, child abuse and neglect should never happen and there is no excuse for this behaviour. These actions have so many implications, not only the child at the time, but for the rest of their lives they carry it with them and there’s evidence to suggest that certain aspects can in fact, be passed on to future generations.I wish I could give more, but I can help put a little towards helping this extremely important cause.
The following are links to websites that I’ve found very useful and helpful in the past few months, all of the following also have a Facebook page/group, and can be found via the search bar.
SMILE stands for Sensation Movement Interaction in Life Experiences. We help a variety of children with profound and multiple disabilities. Lou attends here for hourly sessions, especially in the school holidays it’s amazing 🙂
Promoting inclusion in mental health, education & employment. Endorses University of Derby’s online course I’m currently completing in Autism, Asperger’s syndrome and ADHD.
Improving life chances through better understanding and management of ADHD, change the negative perception of ADHD into a positive.