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.
Today we had Lou’s first Occupational Therapy appointment, she was definitely in her ‘worse case’ scenario mode to be observed, after having a massive meltdown after coming home from school, I think the change of routine may be finally hitting her. And being an afternoon appointment, she was tired and non-compliant. I needed the OT to see this. It was confirmed that Lou certainly has Sensory Processing Disorder, she is a huge ‘sensory seeker‘ and has quite a substantial case of ‘Hyper-mobility‘ in her joints. As she placed her hands onto the examination couch the amount of flexibility in her joints was very noticeable. What this essentially means is that Lou’s joints move more than say, my own, and she has to work harder in aspects such as gross motor skills.
The OT noted that Lou is a very hyperactive child, who is always on the go, always searching for sensory experiences, she stomped around the room and tried to escape from the room to run upstairs in the building several time, I could see that the OT was nodding, and say “Yes” she’s seen this before and it all seemed to make sense! It was like a light bulb moment to have someone agree with what I’ve been harping on about since Lou was 18 months old! As Lou rolled over a special tube, I told the OT that the ‘special tube’ to roll over at home is usually her sister, Moo.
I wanted to ask so many questions, but it was so difficult to talk and keep half an eye on Lou as she was rolling over the examination couch! As soon as we reached home, the OT called me and arranged to visit my home to talk in more detail whilst Lou is at school. what we will also get is further support in terms of a course to explain more and further support in terms of activities that can be done to bring Lou’s level of activity down to a mid-level, as she is functioning on such a high level of activity at the moment and she has to learn to regulate herself, all fascinating to hear. It is definitely recognised that Lou is holding in her sensory overloads all day as she wants to comply and that’s why we see such as escalation in her behaviour once she reaches home, in a place where she feels comfortable to do so. This doesn’t solve the bruises I receive during a meltdown, but if activities are put into place throughout the day, it should hopefully help to improve the situation at home – fingers crossed!
We’re getting there a bit more now, amazing things happen once people start to listen, understand and believe! A bit more light at the end of this tunnel!
Thanks for reading – I can’t praise my family and friends enough for their help and understanding. 🙂
We all explore the world via our senses. The brain has a filter system that allows us to only pay attention to what is most important at that time. This filter may not work in the same way for some people. They may experience things differently, as I always say: “My child sees the world differently.” This may lead to a ‘sensory overload’ due to experiencing many sensations all at once. In our case, a ‘sensory overload’ manifests itself as a ‘meltdown,’ where items are throw, hitting out, screaming and unable to cope with the current situation. We remove Lou to a safe and calm place, she has a ‘calm tent’ where she can access cushions, blankets and her calming sensory toys.
As we know the senses are:
But there are also senses related more directly to movement:
▪ Vestibular – sense of balance and position of the head.
▪ Tactile – sense of touch.
▪ Proprioception – our sense of body position, pressure, movement.
There are people who are ‘Hypo’ (under sensitive) and be seen as a ‘sensory avoider. ‘ on the opposite side, some people may be ‘Hyper’ (over sensitive) or seen as a ‘sensory seeker.’ In my experience, Lou is on the whole a ‘seeker’ – although has some ‘avoider’ tendencies, e.g dislikes showers, swimming and having hair brushed amongst others!
What is a Sensory Diet?
A sensory diet is a planned scheduled activity programme that is designed to meet a child’s sensory needs. This can change over time as the child’s behaviour changes. The application of the sensory diet is used both as a treatment strategy and also to prevent behaviour challenges. A sensory diet is important just as it is to have a balanced food diet, we need a balance amount of sensory information to allow our bodies to function. The sensory diet with aid a child to self regulate their behaviour, emotions and attention.
The benefits of using a balanced sensory diet are:
▪ To handle changes/transions with less stress.
▪ To reduce sensory seeking and avoiding – in particular unwanted behaviours.
▪ To help increase attention, alertness and emotions.
In terms of this checklist in our personal experience:
Lou on the whole, for touch is a definite avoider, she particularly dislikes clothing seems, and takes her socks off moments after having them on! She wears leggings and soft T-Shirts everyday. Lou is not a fan at all, of the shower, having her hair washed or brushed. Although, the exception to touch is that she is a seeker in terms of messy hands, face, others parts such as legs. In materials such as glue, paint, lotion, sand etc. She thrives on these type of activities.
Proprioception: (body sense)
Lou is a seeker in all movement, such as rough housing, jumping, climbing, etc. She is a risk taker and thrives on impulsive and risky actions, for example, jumping off steps at height, she literally has no fear! Lou prefers dry, crunchy foods, she isn’t keen on soft textured or runny foods, especially sauces.
Vestibular: (movement sense)
In terms of balancing, riding equipment, spinning, climbing – especially stairs, Lou is a definite seeker. She enjoys being lifted up in the air and twisted down so her head is facing the floor! She also enjoys bring twirled around by an adult.
Lou comes across as loud, she talks loudly and will create her own sounds to mask other louder sounds, for example, when Moo was a tiny baby crying, the hoover, motorbikes passing by, etc. She isn’t keen at all on sudden unexpected noises, and can hear sounds far away that I can’t even hear! E.g aeroplanes, grass cutters, if Lou has been in a loud environment with a lot going on, she may try and escape, e.g a sports hall, or hold in her sensory overloads until she reaches the safe place of home and will often have a meltdown. Lou made sounds whilst she ate even from 6 months old, when she first started eating sold foods, this came out as humming. She still does this humming and now sings whilst concentrating at an activity and when eating.
Lou has a ‘thing’ about screens, e.g an ipad. She used to be more into the TV but lately she gets absolutely absorbed in the ipad, in fact this is the only time she isn’t moving or talking! Lou has been interested in colours from an early age, she enjoys watching her gel droppers, rainbow projector and goes to sleep with her bubble tube on, which projects changing colours onto her ceiling. Lou dislikes the dark, she will always have a light on somewhere at bedtime, or she can’t settle.
Lou smells everything – play dough, new toys, books etc. She will notice a change in perfume and often says: “what’s that smell?” It may be a new air freshener or that something is cooking. Lou will chew on toys, and will try and get Moo’s dummy to chew on! She now has a safe Chewigen bracelet and necklace if she has the need to chew. These were from: http://chewigem.co.uk/
Sensory diet activity ideas:
– Bear hugs
– Massage with or without lotion
– Joint compressions
– Therapy brushing
– Jump on cash pad – can always be homemade with sofa cushions and pillows.
– Hand fidgets
– Mixing cake ingredients
– Vibrating toys – we have a vibrating neck cushion.
The products are reasonably priced and we received a prompt delivery, I will be ordering more for Christmas this year!
Through starting to use the sensory diet approach for the past month, I’ve already noticed that whilst absorbed in these activities, Lou is calmer and focused. She will often create her own opportunities, even if I haven’t provided them. For example, she will find a wet chalk outside and rub it into the concrete slabs to feel the texture on her hand. She is also always seeking for water play, she fills the sink and will explore soap – I do have to keep an eye on this as she does like to flood my bathroom!
It may be easier to put sensory diet ideas and activities into a chart of plan to clearly see whats to be worked on. Examples can be quite simple:
Source: Google search: ‘sensory diet plans.’
Or a little more detailed:
Source: Google search: ‘sensory diet plans.’
I am currently working on a sensory diet plan for Lou over the next few weeks as she transitions from ending Pre School to the 6 week holidays, in preparation for starting ‘big school,’ in September!
Research series: Aspects of Sensory Processing Disorder.
I have wondered now for over a year how a 4 year old child could be hungry for what seems every minute of the day!
Most mornings Lou has already eaten more than me by 10 am! A bowl of cereal at 6am, a banana, toast, raisins etc! I try to offer the most healthy options I can but it’s so hard when Lou is a dry and beige food lover! I couldn’t understand why Lou is forever saying “I’m hungry,” I wondered if it was boredom but I then researched if it could be some connection to her Sensory Processing Disorder. I found out that fact we have 8 senses, the usual: taste, touch, hear, see and smell. But there is also proprioception and vestibular and an internal sense called interoception.
Interoception is a relatively unheard of sensory system. It is the sense responsible for detecting internal regulation responses, such as respiration, hunger, heart rate, and the need for digestive elimination.
This means that Lou literally cannot regulate her hunger, she never feels full and therefore doesn’t feel satisfied that she’s eaten enough. When I spoke to my mum about this she said that I had this problem too as a child, I had a few weight issues until I was about 14 then went through a period where I ate hardly anything due to a social pressure of looking thin as a teenager. From the age of 21 my weight started to rise again and then even more after having 2 children! I have lost 3 stone since Moo’s birth in March 2015, but I am still struggling to feel full and I often see myself as greedy. As an adult I can self regulate and will tell myself that enough us enough, but at 4 years old Lou won’t have this self control yet. Luckily diets such as Slimming World help me to keep a control on my weight and I’ve still got a way to go.
I do worry about Lou’s weight and she is just like me as a child – solid and tall for her age – she is currently in age 6 to 7 years clothes!
Unfortunately Lou is not a fan of many vegetables especially potato, she’s not keen on pasta either, the all important filling foods! I am currently trialling using a sectioned plate as if certain foods aren’t touching she will eat them, she doesn’t like sauces but is a massive fan of chicken! She would literally eat the same thing everyday if she could!
The only thing other than this I can do is to continue to offer a variety of fruits and vegetables as she may find that she likes them, up until a few months ago Lou would only eat bananas, now she will try apples, pineapple and sometimes satsuma. I will also wait in anticipation for this Occupational Therapy appointment that Lou has now been waiting for since October 2015!
Some people may think that I adhere to Lou as a ‘fussy eater’ but I’d say it’s not being ‘fussy’ it’s Sensory Processing Disorder 🙂 And awareness is key to understanding her needs.
Sometimes I wonder where I’ve been for the past year!
It can only be described as an absolute whirlwind.
One thing I’ve gained from our experience is how to fight … for what you believe in … because you know in your heart your right.
On 16th March 2012 our first child entered the world, I’d spent countless hours watching a popular programme about birth stories (not sure if I can mention the name!) I tried to imagine what the pain would be like as I’d never experienced serious pain before, never been in hospital apart from my own birth, never broken a bone or ever had a serious illness.
I was mentally prepared for a natural birth, I found comfort in a ‘Hypnobirthing’ CD. At 4am on Friday 16th March my waters broke I was surprisingly calm! I didn’t have any contractions so when calling the midwife I was told to remain at home until the labour progressed. By lunchtime nothing was really happening and I didn’t feel right I noticed something wasn’t quite right so I phoned the midwife again and after describing my symptoms, was told to immediately go to the hospital. When I arrived I was told that I had Meconium in the waters, I surprisingly was still calm I think adrenaline had taken over. After a few hours nothing had progressed so I was told I’d be induced with a drip, with the addition of another drip in the other arm due to having Strep B. I was constantly monitored on a heart monitor and given pain relief after the induction made the contractions come thick and fast. Then I can only remember being very sleepy and drowsy whilst an epidural was put it. The pain went away but nothing progressed, I then started to become anxious and unsure of what was going on, the midwife said to me: “your baby is becoming distressed, the heart rate is dropping, we need to act quickly to get the baby out,” the next thing I can remember was a yellow form being placed before me to sign consent for a c section. I remember the lights along the ceiling of the corridor, it was 11.30pm and there were so many people in the theatre room. Lou was born at 11.45pm, she was safe and the most precious thing I’ve ever seen. I was crying and nervously laughing as the surgeon finished stitching, I was made to laugh more as he said “no mommy, wow mummy” to stop me from moving!”
The day after I looked like a swollen balloon! Lou was struggling to latch and I felt like a failure, I wanted to go home and found it overwhelming.
Time went on after returning home, Lou developed Colic and was hard to settle but overtime it became easier. At 6 months old she became sick when given dairy items – literally projectile!
Lou was diagnosed with a dairy allergy at 9 months old, which may be a factor with her current relationship with food, only sticking to the same foods that she perhaps feels safe eating.
Lou sat up at 8 months, crawled at 11 months and didn’t take her first steps until 17 months. I took her to be assessed by a Physiotherapist as she tended to walk on the outsides of her feet just like her dad and had mysterious fatty lumps on the heels of her feet. No ongoing issues were found. I have recently read via research I’ve done that children with SPD tend to be later crawlers and walkers.
I first noticed behavioural issues about 2 years of age, which I put down to the ‘terrible 2’s’ stage. She was impulsive – would run away from me and not be worried if I’d gone out of sight. After settling into our new home and new pre school I thought that her behaviour would be just a ‘stage.’ Lou started to have extreme tantrums at the start of the summer holidays of 2014, even though we did so much together – picnics, parks, visiting friends and family, etc., She still would meltdown whenever we were at home. Then I discovered I was pregnant with my second child, we put off telling Lou to prevent any further upset. I then approached a local service for help and advice with the behavioural issues and temper tantrums, I was told this was ‘age typical’ and agreed that a parenting course may be beneficial.
I was getting on well at the course and my confidence was building but I had to walk 1 and a half miles to catch a bus from my home, then travel 7 miles on the bus to the course destination, so I managed 4 sessions but to suffering hip and back problems in pregnancy and had to wear a support belt. By 6 months of pregnancy it became noticeable and we tried to explain to Lou that she would be having a baby brother or sister to prepare her. We noticed a massive a increase in the amount of tantrums Lou was having and she came across as angry towards both myself and her daddy. This was upsetting for me with the addition of pregnancy hormones to contend with, I kept telling myself once she’s older she’ll get better.
We expected the difficult behaviour to still continue after the birth of my second child, Moo. It was difficult having to deal with the meltdowns whilst also recovering from a C-section. Because we couldn’t get out very easily, time at home can only be described as ‘desperate,’ professionals that I spoke to continue to promise me that this behaviour was normal for her age and that it would pass. I chased up a waiting list I’d been on since before Moo was born and they had no recollection that I’d asked for support. I felt completely let down by the system and that they didn’t believe that it really was that bad so I started to take pictures and videos of how bad it could get, with any item Lou could get her hands on being launched at me down the corridor, I had to hide away in the bedroom with Moo to avoid being caught with a flying toy or book!
Going out anywhere with a pushchair and Lou became a nightmare, she’d randomly and impulsively put all of her force onto the pushchair in an attempt to swerve it into the road. I had to have my wits about me 100%. She would sit down in the middle of the road whilst we were using a pedestrian crossing, so I’d have to lift her up and carry her off! Some kind people would ask if I needed any help but I was just mortified when people watched and stared at us! I wanted the ground to open up and swallow me!
Walking to and from places were also a nightmare, Lou would impulsively sit down on any pavement and even lie down in a protest to be carried. I tried using a ‘Buggy board’ but she was too heavy and the whole pushchair would tilt over!
After this came what I describe as the ‘extreme tantrums,’ they occurred up to 10 times a day and were physically and mentally draining. These tantrums or anger outbursts were usually started through Lou trying to grab the legs of Moo whilst she was in my arms, we often just had to shut a stair gate and keep Moo in to prevent any harm, whilst any item possible was launched down the corridor. I stressed at first about the damage done to toys and books as I couldn’t replace them, but had to learn that these outbursts were a cry for my attention. Its so difficult to care for a newborn and deal with all the hormones when all this is going on, Moo was so dependent of me but I was desperate to give Lou the attention she needed.
Any help I asked for from then on from health visitors and the local children’s centre came to the conclusion Lou’s behaviour was down to our ‘parenting skills.’ Any behaviours I described they came to the conclusion this was “normal for her age.” I was fed up with hearing this over and over again. I completed 2 different parenting courses, some changes were made including the use of a ‘Visual Timetable’ and signing words, we also ensured that we worked as a team, with clear and consistent boundaries. With the continuation of ‘normal for her age’ Lou’s behaviour, especially at home and when out in public became worse rather than better as the professionals believed it would as she accepted Moo and that she was here to stay in our family! I finally cracked and wrote an 8 page letter to our family GP in December 2015 as I struggled to get Lou down to the GP’s surgery on my own. Our family GP, from looking at all the evidence could see that it was in fact Sensory Processing Disorder that Lou had. The GP referred her to an Occupational therapist. By early March 2016 I still hadn’t heard anything about this referral, so I chased it up to be told that Lou was to see a Community Paediatrician in April 2016, this was news to me! I’d visualised Lou being given to support, in particular how to teach her that she’s putting on too much pressure onto Moo and other people. Only time will tell if we get the appropriate support and advice to help Lou as she grows. I read another article where the parent believed that the professionals she took her son to see were unwilling to diagnose him with anything as they believe she was just trying to get Disability Learning Allowance. We already know that we don’t qualify for this so all we are after if some answers to help cope with our daughters condition in order to help her in the best way possible.
SPD is not as well known in the UK as it is in places such as the USA. I’m researching SPD to understand it more and have joined support groups in the UK and USA.
Here are the traits that Lou currently displays, in a nut shell, there’s more in the folder I’m collating for her!
Not keen on wearing clothes, will take them all off after returning to the house.
Is rough with younger sister, she doesn’t realise how much pressure she’s putting on her sister to hurt her. Rather than playing with her she just wants to wrestle her finds it difficult to focus on playing with toys.
Will only eat the same foods everyday. These are usually dry and beige in colour! Will notice if there is a slight variation e.g. a change in the brand of sausages! Reluctant to try new foods, will spit out if she doesn’t like the taste.
Never feels full – will say “I’m hungry” all day, at parties she will keep eating until the point where she is sick.
Is anxious before leaving the house or in unknown situations, has to be told several times what is happening and now uses visual picture cues to prompt.
Will not always give eye contact, does more to familiar family members, it is difficult to gauge whether she is actually listening to what is being said, or just choosing to ignore.
In conversation will talk off topic, if something pops into her head she will talk about that instead of the original topic of conversation.
Chews objects and sucks clothing, especially toys.
Sensitive to noise – covers ears. Dislikes loud and unexpected noises, e.g. a crowd of people clapping, a hand dryer. Creates loud noises herself to cover other loud noises, if Moo is crying she will try and drown out the noise with her own, e.g. screams, shouts.
Hates wearing clothes – will tolerate leggings and joggers, hates jeans, doesn’t like socks – will take them off at any opportunity, prefers to be in only vest and knickers at home, likes to outside without any footwear on.
Is a runner – doesn’t see potential dangers, finds it funny and will laugh as running away and want you to catch her, even by a busy road or run straight out of parks. Extremely impulsive and unpredictable.
Hates swimming, too afraid to get into the water even though she was taken swimming frequently from 8 weeks old.
Hates having hair washed, brushed and tied up, screams and says: “don’t touch me!”
Frequently appears hyperactive – wants to jump off furniture, climb over people sat there and runs around a room in circles, in public places will run around large spaces, e.g. the library.
Always in people’s faces – gets too close, no awareness of personal space and overly friendly to strangers, will go up to anyone who smiles at her and hug them, has no ‘stranger danger.’
Anger – so much pent up anger – will throw toys, furniture, anything can get her hands on. Shouts and screams at the top of her voice, usually says things like “my child” or “stupid adult” or “don’t look at me.” Has recently slapped me in the face in anger.
Struggles with empathy/sympathy – has no idea that she’s hurt Moo the majority of time.
Very centred around herself – e.g. when it was Moo’s birthday she couldn’t believe that the presents were not for her. She wanted to open all of them and had a meltdown if she couldn’t. If we’re eating/drinking even she’s just had her own she will always demand more.
There are many other little things that crop up, to this date no professional has read all of this info, when they ask the same question every time: “So… what is she like?” I just freeze, mix my words and they end up putting words in my mouth! And I end up agreeing with them every time!
This time I hope to be prepared and send on all the info I have collected a week before our Paediatrician appointment so they can then ask me questions based on all the info they’ve already been given. Often I’m told that this behaviour is ‘normal’ I’d love to hear from other people with experience in SEND, SPD etc, to hear their views. Because I was told it was my parenting that was at fault I completed 2 different parenting courses and, yes things have improved but its not cured all the issues, we still have lots of tantrums, anger outburst and
Reading all this back, I realise how similar I am to Lou and that’s maybe why I ‘get’ her, e.g. I remember being so distracted through a whole school day as a label was scratching my neck, I found it so hard to concentrate on anything else. My parents also remind me now how when I was Lou’s age I would change clothes at least 4 times a day, even if there was a speck of dirt on them!
As well as being so alike we are also different in many ways, e.g. Lou likes making loud noises, I like the quiet! I find it extremely overwhelming if both children are screaming and crying! Lou likes the light, I like the dark!