My friend ‘Izzie’ ~ our experiences with an imaginary friend

This is Lou’s drawing of her friend ‘Izzie’
I am aware that many young children have an ‘imaginary friend.’ Wikipedia describes an imaginary friend as:

“Psychological phenomenon where a friendship or other interpersonal relationship takes place in the imagination rather than external physical reality.” Source: www.wikipedia.org

I always thought that imaginary friends were common for Pre-School-aged children, but researching further I’ve read that:

“By age seven, 65% of children have had an imaginary companion at some point.” Source www.todaysparent.com

This gave me some reassurance as Lou has only just introduced us to her ‘friend’ called ‘Izzie.’ When she first mentioned a girl called ‘Izzie,’ I thought that it was a member of her class and then I discovered that there was nobody in the class with that name and then ‘Izzie’ started arriving at our house, and the penny dropped!

From what I can gather, Izzie is a 4-year-old girl, just like Lou who “spits at her Mummy and Daddy.” I soon came to realise that Izzie would do a lot of negative things like “push her little sister over” and “not listen to her Mummy, or Daddy.” I build a picture up that Izzie was in fact a sort of persona of Lou’s behaviour that she didn’t like to admit to. If anything went wrong, such as a toy got broken, Lou would quickly say: “It was Izzie’s fault.” Lou has never been able to admit that she has done something such speaking to me in a rude manner, however, she is able to freely admit that Izzie is a culprit for a lot of these negative behaviours.

I spoke to a few other parents, as I seek a lot of reassurance via parenting forums, especially those for parents of children with additional needs, and a forum for parents who children have been diagnosed, or shows traits of PDA (Pathological Demand Avoidance,) and I soon realised that many children use an imaginary friend or comfort item/toy to scapegoat their own behaviours. This is maybe a side of Lou that does display that she has a very good imagination, 

“there are numerous informal as well as some scientific reports of children and adults with high functioning Autism having an imaginary friend (eg. Attwood, 2006; Calver, 2009; Holliday Willey, 2011.)

“Research in this area may challenge the view that high functioning autistic individuals are not very imaginative, and reduce the common misconception that having an imaginary companion is necessarily linked with mental health issues.” Source: www.ambitiousaboutautism.org.uk

I don’t think that ‘Izzie’ makes an appearance whilst Lou is at school, she must be occupied with the children in her class, but I have noticed that Izzie does appear more during school holidays, it must be a strange concept for young children to be surrounded by other children all term time then suddenly not during the holidays and she only has Moo at home for company, who hasn’t reached the same level of conversation just yet!
I don’t think that Lou is lonely, possibly more during the holidays as she is a social butterfly, if a little ‘too in-your-face’ sometimes! (Bless her,) She has more social skills and confidence (or outwardly appears to,) than I did as a child. I had an imaginary friend called ‘Tinkerbelle’ when I was 3 and she was there as a companion for me as I can remember feeling lonely and never quite fitting in with the crowd, invented Tinkerbelle as I was so unsure of how to make my own friends or how to even talk to other people.

I’ve had this sketch of ‘Tink’ for 10+ years after my sister brought it back from Disney Land in Florida.

I don’t think that ‘Izzie’ being around is anything too much to worry about at this point, however, I do not openly talk about her unless Lou brings her up in passing conversation and keep it very light, e.g. I saw that Lou had got out her ‘spinning’ chair into the middle of the room and she said: “There you go Izzie,” and addressed me: “Mummy, be careful, don’t sit on the chair, Izzie’s sat there,” to which I replied: “Oh is she? Ok then.” 

Thanks for reading 🙂 



Spectrum Sunday</div

Visuals, Visuals everywhere…

Our house is currently covered with visual aids. I’ve used visual prompts in my job role as a teaching assistant, Nursery SENCO (title name in 2009,) and Early Years Teacher. I find the pictures of actual objects work very well with all Early Years children. And I also used the actual objects to show to babies as a prompt, e.g a nappy when it was time to change their nappy.

At first I wondered if visuals would work for Lou, but I discovered that she was responding really well to a ‘Visual Timetable’ and ‘Sign-a-Long'(signing system) at her Early Years setting. Even though Lou is verbal, she may not always understand what is being asked of her or what she is saying herself. Using visuals has aided that ‘Processing Time’ that is so vital for Lou – offering her at least 10 seconds after a question or request. Using a visual is a practical way of getting across a message to her without her having to think really hard about what is being said. 

Here is what ‘Autism West Midlands’ state about visual resources:

Why do visual resources help people with autism?

• Many people with autism are ‘visual thinkers’ so information can be easier to process and understand if it is presented visually. 

Visuals are more permanent than words. Once something has been said it can quickly be forgotten or misinterpreted, whereas a visual will always stay the same and can be referred to as many times as needed.

• People with autism can find verbal communication difficult to understand because there are so many different bits of information to process all at once. Visuals allow a person to focus just on what is being communicated, rather than having to decipher the tone of voice, eye contact and body language etc. 

• Visuals can help people with autism to express their needs – if someone struggles to communicate verbally, visuals can be used to help them tell others what they want and need.

• Visuals can help to increase independence – for example if a person struggles to get themselves dressed in the mornings, try using a visual prompt to help them understand what they need to do.

How can visual resources support those with challenging behaviour?

• People with autism crave predictability and structure. When there is not enough structure people with autism become anxious. Visuals help to provide this structure and predictability, which reduces anxiety.

• Challenging behaviour can occur when a person with autism cannot express their needs or doesn’t understand what is being communicated to them – visuals can help with this.

• Visuals can be used to help people with autism understand how they are meant to behave and what is expected of them.

• Visuals that incorporate a special interest can help to motivate and reinforce the expected behaviour.

Taken from ‘Using Visual Resources – Introduction. www.autismwestmidlands.org.uk

Illustrated small cards. 

These smaller visual cards are very good for aiding processing time, for example, the card that displays putting Pyjamas on is frequently used, also the one for ‘Good Listening.’ When we would like to gain Lou’s attention. 

Now’ and ‘Then’ boards.

Many times Lou can get overloaded with information, she often wonders what the day will bring and asks every morning (around 6am!) Where are we going today? 

This is when the ‘Now’ and ‘Then’ visual prompts are very useful. Where photographs of the actual activities, actions or places are taken: 

For the above this displays that ‘Now’ it is craft time and ‘Then’ it is lunch time. This clearly displays the activity or action that is happening now and after to allow Lou to process what is happening, and also reduces the anxieties of not knowing what is happening. 

Specific routine visuals.

These cards for ‘Crossing the road,’ ‘what I need for swimming,’ and ‘getting dressed,’ were taken from the ‘Autism West Midlands Website.’ (Link below.)
These routine visuals for ‘Getting ready for school,’ ‘after school,’ and ‘getting ready for bed,’ were found on a website called ‘Understood,’ (Link below.)

The above are examples of pre-made specific action or activity timetables that I have printed then laminated. 

Traffic Light Visuals.

After recent input from an OT it was suggested that a traffic light system could be used in order to help Lou to understand how she is feeling and to help with sensory overloads.

I designed the above visuals and used actual pictures for:

Green = general activities of choice. 

Orange or ‘Amber!’ = activities to help calm/burn energy ~ dancing to music or play dough. 

Red = time out in the ‘Calm Zone,’ which is the sensory area situated under our stairs, or to lie on her bed and calm using a weighted blanket.

The aim is for Lou to eventually recognise when she’s feeling a bit overloaded and select an option independently.

Reward systems.

We have tried sticker charts, charts where a hand moves up every time kind hands were used, a ‘Family Starry sky’ where star stickers are added everytime someone in the family achieves something. But nothing has worked as well as the ‘Special Interest’ chart below:

‘Frozen’ achievement chart with characters to earn, can also be snowflakes to earn.

Lou has been a huge ‘Frozen’ fan now for about a year, this chart didn’t take too long to make via a ‘Word’ document, the blue circles are easily copied and pasted and I got some Velcro to enable Lou to add the characters one at a time onto the chart as and when she achieves something. When all 5 discs are achieved Lou receives a reward, which I have been advised, doesn’t always need to be a reward that costs, this can be a trip to the park, or ‘Mummy time’ where Lou and I do a particular activity of her choice without her younger sister present. I have found that Lou is particularly motivated by her current ‘Special Interest’ of ‘Shopkins’ and therefore she enjoys earning the smaller sets or magazines which are not too costly. As a family, we are finding that this chart has helped to encourage Lou to use kind hands and has been hitting out less often, it’s also been beneficial in terms of Lou’s current issue of spitting, this has been occurring less frequently since the introduction of the chart. As the interests change, so can the chart to keep the child’s interests, after Christmas i’ll be changing it to a ‘Shopkins’ chart. 

A chart I made for a friend’s son who is a big fan of ‘The Avengers.’

I have found the following sources are amazing for examples of visuals:

  • Autism West Midlands – 

Help and advice, visual resources

There are some really helpful guides to using visual resources and they offer some printable resources. 

  • Do2Learn – 

Printable Picture cards

Here there are also fantastic ‘Social Stories’ that we have used with Lou, these are visual stories where steps of an event or practice are shown in order. We used a Social Story when Lou had to go to the local hospital for her Microarray blood test and we were amazed how well she coped with the experience. Social stories can be used for a visit to the doctors,  dentists,  hospital,  park, play dates, parties, etc. There is more-or-less a Social Story for any event. 

We used this ‘Social Story’ when Lou had her blood tests.
  • Understood – here we were able to print off the routine visuals for bedtimes, getting  ready for school, etc. 

Visual planners

For more information on ‘Sign-a-Long’ please visit:

www.signalong.org.uk

Thank you for reading 🙂 

If anyone has any queries on visuals please contact me at: 

sensorysensitivemummy@outlook.com 

Sleep and bedtime research

As I write regular Blog posts for the charity ‘Family Fund’ they now have a new sleep support hub, where information about bedtime routines, sensory influences, etc are shared. I wrote a post for the sleep support hub, called ‘Tired Out’ titled: ‘Sleep in our household.’ Which can be found via the link below: 

‘Tired Out’ 
As the bedtime routine is currently very tricky in our household, this has prompted me to research sleep in children. I will be featuring fellow Bloggers’ experiences of sleep and bedtimes in their family. 

I remember being a child who found it hard to fall asleep and being told that “we need to sleep to recharge our batteries.” I have always been a night owl and I find I think best in the evenings, this was ok at the weekends before I had children, but it’s very difficult when your children get up at 5am and you’ve gone to bed at midnight! 

Lou’s sleep and bedtimes:

Newborn Lou

I can remember the feeling of being in hospital after Lou had just been born, I hadn’t experienced interupted sleep for a few years. It was a shock to the system and she would be awake for most of the night, I think over a 48 hour period of being in hospital I must have had around a total of 3 to 4 hours sleep! When she did go off I couldn’t sleep as I was watching her breathing! There was also noise from other people on the ward and staff talking loudly! I couldn’t wait to get home! I would describe Lou from the day she was born until around a month old as ‘nocturnal!’ She would literally sleep all day and was awake all night! I can remember fighting with myself not to fall asleep whilst holding her when having a feed. After about a month I can remember the look on Lou’s father’s face as he’d too never experienced such sleep deprivation! We both sported dark circles under our eyes! 

From around 4 months Lou had a pattern where she would go to sleep around 10pm, wake at 12 am and again at 2am for a feed, then sleep until 7am. This was the best feeling in the world to get a solid 5 hours sleep felt like such a relief! This followed until she was around 6 months old and then teething and weaning set in and sleep would be interupted again fairly frequently, we’d usually take it in turns to attend to her and as Lou’s daddy worked full time in the week, he’d normally get up at the weekends and I’d do the weekday nights! At 9 months I could see that something wasn’t quite right and Lou would have 11 dirty nappies a day and this would also happen during the night – around 4 times. This is when I discovered that she was intolerant to all dairy and egg products. Once we sorted her diet and the milk substitute out her sleep pattern improved again. (I will be writing a more detailed post about ‘2 dairy free kids.) 

Lou at around 9 months old

From 9 months right up to 4 years we were extremely luckily that Lou slept from around 7pm until 7am. Even through 3 house moves! 

Using her Princess inflatable bed the night before we moved house

There were some occasions where she’d wake up due to a reaction to a dairy or egg product that had accidently been eaten. From age 4 Lou started to wake up at 6am, then 5am and sometimes 3 or 4am! We tried putting her to bed at 8pm rather than 7 and on odd occasions like family parties, etc she’d have a late night of 10pm, but still get up at 5am! 

Latest situation: 

Around May 2016 Lou started having a problem with actually going to bed. She would refuse to put her Pyjamas on, would run around the house screaming to get away and started throwing objects. This started around the same time that Lou became aware that she’d be transitioning to first school and that she’d be leaving her current Pre School where she was very comfortable and happy. We had to make many adjustments to get bedtimes right for Lou, at first we tried using classical music to calm her, we tried using bubble tubes and a rainbow projector, and leaving a lamp on as she’s not a fan of the dark. With the advice of a Family Support worker, we gave Lou a sleep visual timetable where she’d receive stickers for each part of the bedtime routine that she successfully completed, eg brushing teeth, etc.

Bedtime chart – visual timetable, including photos of actual objects
Bubble tube and Rainbow projector

All of the methods mentioned above helped for a time, but by July we had to take even further measures as Lou had started to run around upstairs to avoid getting ready for bed and was able to climb the standard sized stair gate installed on her bedroom doorway. Therefore we had to get an extra tall stair gate for her safety. We would also find Lou had climbed into Moo’s cot! We removed all the toys from Lou’s room as she’d started to throw the toys and boxes out from her room in order to gain our attention once she’d gone to bed, she started to bang the door into the wall, making a hole so we had to remove the door from the room! 

Lou has fallen asleep reading a book!

We set a clear ‘2 stories then it’s good night’ routine, as given the chance Lou would keep one of us up there for 10+ stories! We went through around a month of screaming and calling for ‘mummy’ or ‘daddy’ which is heartbreaking. We wondered what else we could try and as Lou doesn’t like being on her own we decided to take a chance on putting the 2 girls in together ! This hadn’t been done previously due to Moo being smaller and unable to call out if Lou was climbing into her cot. We wondered if they may wake each other up, but after a few days of getting used to sharing a room, there has been so much improvement to Lou’s bedtime. At present it’s usually Lou that goes up first to bed as she gets up so early she displays particularly tricky behaviours before bedtime. This will hopefully change and once Moo is old enough they will be able to share bunk beds which Lou is already very excited about! 
Moo’s sleep and bedtimes:

My experience of sleep with newborn Moo was pretty much the same as when with Lou but I noticed a lot of Reflux from early on, so much so I had to ask for someone to bring in more sleep suits and vests for Moo as I’d taken about 20 and this wasn’t enough! Both of my babies had colic and Moo, a more severe case of Reflux. The difference this time around was I couldn’t ‘Sleep when the baby sleeps’ as I had a 3 year old, an extremely lively Lou to look after and we were at this time living in a first floor flat so there was no escaping into a garden for Lou! Once Moo was treated for her Reflux and her milk sorted – which was prescription she was sleeping from 8pm until 6am from 3 months old with an occasional wake up at 2am for a feed. The only times that Moo’s sleep pattern has been interupted is when she’s teething, she wakes up and we just have to go up and re-settle her. Moo has coped with a house move and is now coping well with having Lou sharing her room. Moo still has a morning sleep around 10am and then again around 3pm and this is like clock work! Moo has a fantastic understand at 17 months, if we say to her “do you want a sleep?” She will walk to the bottom of the stairs and wait by the stair gate!  We are hoping to drop a sleep soon, hopefully the morning one as she will start pre school in March 2017. 
What the ‘Sleep Foundation’ says about children and sleep: 

Babies:

 Infants typically sleep 9-12 hours during the night and take 30 minute to two-hour naps, one to four times a day – fewer as they reach age one”

“When infants are put to bed drowsy but not asleep, they are more likely to become “self- soothers” which enables them to fall asleep independently at bedtime and put themselves back to sleep during the night.”

Toddlers: 

“Toddlers’ drive for independence and an increase in their motor, cognitive and social abilities can interfere with sleep. In addition, their ability to get out of bed, separation anxiety, the need for autonomy and the development of the child’s imagination can lead to sleep problems.”

Children:

“Preschoolers typically sleep 11-13 hours each night and most do not nap after five years of age. As with toddlers, difficulty falling asleep and waking up during the night are common. With further development of imagination, preschoolers commonly experience nighttime fears and nightmares. In addition, sleepwalking and sleep terrors peak during preschool years.”

“Children aged six to 13 need 9-11 hours of sleep. At the same time, there is an increasing demand on their time from school (e.g., homework), sports and other extracurricular and social activities. In addition, school-aged children become more interested in TV, computers, the media and Internet as well as caffeine products – all of which can lead to difficulty falling asleep, nightmares and disruptions to their sleep. In particular, watching TV close to bedtime has been associated with bedtime resistance, difficulty falling asleep, anxiety around sleep and sleeping fewer hours.”

Source: Sleep Foundation

 
I also found some great information from:

The Children’s Sleep Charity 

They also have a Facebook page.

Please look out for following featured posts from other parents who share their experiences of sleep and bedtimes.

Thanks for reading 🙂 

A Sensory Diet 

My understanding of Sensory Processing. 

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:

▪ Sight

▪ Sound

▪ Smell

▪ Taste

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.

This sensory checklist from ‘Raising a Sensory Smart Child,’ © Biel & Peske, 2005,

Will allow parents to see what specific areas can be worked on in terms of sensory diet experiences, this can be found here:

www.sensorysmarts.com

(Click ‘Sensory Checklist.’)

In terms of this checklist in our personal experience:

Touch:

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.

Listening/Auditory:

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.

Looking/Vision: 

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.

Taste/smell/oral comforts: 

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:

Touch/deep pressure:

Swaddling

– 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.

– ‘Messy play:  Finger paints, glitter glue, soapy foam/shaving foam, whipped cream, custard play.  Spaghetti cooked or dry, rice dyed with food colouring, sand play, play dough,  Gelli Baff, Magic Snow, Gak, clay.

– Helping with gardening

Cornflour, water and pink food colouring
Sand painting – mixed with PVA glue and paint
Foamy sand – sand mixed with water and washing up liquid
Cooked Spaghetti play
Coloured rice – using pink food colouring
Soapy foam (Olaf) bought from a supermarket, gentler than shaving foam for children’s skin. As both Lou and Moo have dry skin.
Vibrating neck cushion, Lou likes to use around her arms or waist
‘Fiddle toys’ from Learning SPACE, including stretchy men, dinosaur, butterflies, stretchy Spaghetti, etc

Movement/Proprioception:

– Rocking – in arms, rocking horse or chair.

– Running, marching, dancing, jumping.

– Bunny hops, wheelbarrow walk, animals walks.

– Monkey bars

– Climbing stairs

– Climbing ladders

– Trampoline jumping

– Use a ‘Sit and Spin.’ Or other spinning toy.

– Therapy ball – we have a ‘Peanut ball.’

– Swimming

– Brain Gym and Yoga exercises

– Balloon tennis

– Hopscotch

Using her Peanut ball, independently or it came with ideas for exercises with children. 


Listening/Auditory: 
-Listening to favourite music

– Calming (classical music)

– Bang pots and pans

– Musical instruments

– Listening to outdoor/nature sounds (have a phone app)

– Singing, humming, blowing whistles

– White noise (phone App)

– use headphones or sound cancelling headphones

– Use a safe space with quiet and low light – ‘calm tent’

Music session with mummy, exploring the instruments

Looking/Vision: 

– Lava lamps, bubble lamps

– Coloured light bulbs

– Toys in opaque containers

– Look at photos

– Look at picture books

– Look at nature – fish tanks, farm, zoo, seaside

– Games and activities that develop visual skills,  mazes, dot-to-dot, I Spy, etc.

‘Rainbow in my room’ projector from Learning SPACE
Bubble tube from Learning SPACE, I filled with Distilled water. Includes some fish and balls to put inside tube. Changes to various colours and projects onto ceiling.
Gel droppers which are inside the ‘calm tent’ 

Smell/taste/oral comforts: 

– Essential oils and scented candles

– Smell flowers

– Smell herbs and spices

– Blindfold smelling game

– Explore tastes: sweet, sour, salty, spicy, bitter

– Eat frozen, cool, warm foods

– Bubble blowing

– Use an age appropriate ‘Chewy’

Banana scented dough

A lot of Lou’s sensory equipmemt and toys came from ‘Leaning SPACE.’ Ordered online here: http://www.learningspaceuk.co.uk/

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!

Thanks for reading 🙂

picture_20160801_102935339.jpg

PDA part 2!

Wow how much I missed in my last post about our experiences of ODD and PDA!
The following article popped up on my news feed this morning:
www.autism.org.uk – What is PDA?

Cue doing what I do best and scoring Lou against the PDA ticklist from the PDA Society and printing off the relevant information for her Paediatrician, I think I’m in ‘fighting mummy’ mode and “What have I got to lose?!”

image

image

Source: http://www.pdasociety.org.uk
For children a score of 50 and over…

“Identifies individuals with an elevated risk of having a profile consistent with PDA.”

Lou scored 68!

I’ve found out so much more from the article from the National Autistic Society (NAS,)
I think it’s probably easier to bullet point what I’ve read in terms of our current situation with Lou:

● PDA is anxiety based on a need to be in control – feel secure when in control.
● Boys and girls can be equally effected, unlike Autism and Asperger’s Syndrome.
● PDA presents as controlling and dominating. Lou controls every situation, e.g up and down the stairs “I have to be first,” first to dress, first to finishing eating, will get distressed if I finish my lunch before her saying: “I wanted to be the winner.”
● In the PDA Society Booklet ‘Awareness Matters,’ it talks about children who “put on a performance, hiding all of their difficulties, for limited periods of time,” it does on to say that the people who spend most time with these children,  ie parents, notice their problems more.
● I’ve been noticing so much lately about the way in which Lou talks to us as adults, I find it quite rude and bossy. Children with PDA are often seen as ‘mini adults,’ Lou has said to me frequent times, (especially when she’s angry,) that “Mummy you are the child and I’m the adult.” Only yesterday she demanded that I “get up and get some food, now!” When I explained that this isn’t how we should ask for something she counted from 1 to 10 several times then told me to “go onto time out – NOW!” Which is the counting for processing time that we offer as parents when asking her to do something.
● Lou will tell other children how to behave but often doesn’t apply the rules to herself. E.g “you need to hold your mummies hand when crossing the road,” but she doesn’t do it herself.
● Lou will often talk in an adult way, using adult manorisms, for example, she will tell other children off, especially Moo saying “look at my face, good listening now, or its ‘Time out!’
● Lou will often blame other children for her actions,  for example she said “Billy did it” after she drew on her trousers with pen. (Name has been changed.)
● Lou will deny actions even if she’s caught red handed, for example, if a book has been ripped she’ll say “Moo did it” even if she’s been asleep upstairs or sat in a high chair nowhere near!
● Lou will show little shame or embarrassment if she throws a tantrum in public, she will not be bothered by people starting or commenting if she’s rolling around having a tantrum on a supermarket floor! It’s taken me a long time to cope with the stares and comments!
● In order to avoid a demand or request, Lou will answer politely: “No thank you,” and often says “I’ve got a sore back,” “my leg hurts.” Or “I’ve got a headache,” to avoid doing something.
● Eye contact – Lou generally uses eye contact especially if things are going her way, although she never uses eye contact when asking her to do something, often making it look like she hasn’t heard us. We have arranged for her to have a hearing test in July to rule out any hearing problems, but deep down I just know that she’s hearing us, but choosing not to listen.
● Links to SPD – another light bulb moment when I read that PDA has links to sensory difficulties in processing information in terms of light, sound,  smell, taste and touch.  This can also have an effect on Proprioception difficulties (bodily awareness) and vestibular awareness (balance.) I have had concerns about Lou’s spatial awareness and the amount of accidents she has and appears clumsy.
● Severe behavioural difficulties can be present,  can have problems controlling temper, and many people can appear passive and compliant at school, but appear very anxious at home. This describes Lou perfectly!

So where do we go now?
I’m currently testing some strategies that involve:

“a less directive and more flexible approach,” http://www.autism.org.uk

Only this morning we have tried an approach where we offer choices if Lou cannot cope with being asked to “get dressed” we then said “we’re going to leave your clothes here, you can get dressed or we’ll get Moo sorted first.
‘First’ being the operative word, make Lou spring up and collect the clothes saying: “I’ll get dressed now!”

I had used a more wordy but subtle approach with Lou last week after she demanded we go to the park and was scrutinised for “letting her control me” and “not being tough enough with her,” making me think whatever I do I’ll be judged! This is why I’m constantly researching as knowledge = understanding (which I bang on about!) But I just wish everyone could understand!

Further information.
I found that advice in getting a PDA can be found at:
www.norscaca.org.uk
At the Elizabeth Newson Centre (Autism East Midlands.)

I’m going to email for more information at

http://diagnostic-centre@autismeastmidlands.org.uk

Thanks for reading 🙂

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Pathological Demand Avoidance (PDA) and Oppositional Defiant Disorder (ODD)

Research Series:
Oppositional Defiant Disorder (ODD) and Pathological Demand Avoidance  (PDA.)

When researching ADHD, ASD and SPD I have come across ODD and PDA, particularly PDA I’ve seen a lot about recently.  I’ve not come across either of these in my childcare career, so I was keen to find out more. I’m no expert and I’m definitely not a Paediatrician! But Lou does almost tick every box of the symptoms for both, but particularly PDA. I was confused before about why she was acting in such ways and this does explain a lot. I’ve been particularly worried lately regarding Lou’s behaviour at home and recently re – referred to Family Support via a local Children’s Centre.

ODD.

Symptoms of ODD may include:

• Throwing repeated temper tantrums
• Excessively arguing with adults
• Actively refusing to comply with requests and rules
• Deliberately trying to annoy or upset others, or being easily annoyed by others
• Blaming others for your mistakes
• Having frequent outbursts of anger and resentment
• Being spiteful and seeking revenge
• Swearing or using obscene language
• Saying mean and hateful things when upset

ODD often occurs with those that have ADHD.

Source: www.webmd.boots.com

From reading these symptoms I could immediately relate to what we are currently experiencing at home.
– Lou throws up to 10 temper tantrums per day.
– She will argue with myself and partner and even pushes boundaries with my dad – who to this day I wouldn’t!
– Any requests or rules Lou is given she will usually ignore and point blank refuse. For example: “Pyjamas on” response = “no” or completely ignores and/or runs away.
– Lou will deliberately annoy and pester Moo, which she does for the majority of the day, Lou is equally annoyed if Moo enters her person space and she will usually push her away.
– Lou has anger outbursts frequently throughout the day, she will scrunch her fists together and growl loudly. Sometimes she will say “I’m really cross.” She will then often throw objects,  especially toys.
– Lou can be quite spiteful, if she’s been refused something such as food (if she’s already eaten plenty,) she will say things like “I’m going to climb over the stairgate and get it myself.” This is said in a forceful and angry manner. She will often say things like “I’m going to pick this up and hit you” if she doesn’t want to go to bed.
– We try our upmost to ensure that our children are not exposed to those who swear, which has caused a bit if controversy! But it’s for their best interests,  I don’t want Lou repeating this language, which she doesn’t understand.
– As discussed, Lou will often say hurtful things when she’s upset, these can be: “I hate you,” “don’t even look at me.”

PDA.

When looking up PDA I found the PDA society website (link below) most helpful.

People with Pathological Demand Avoidance Syndrome (PDA) will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control.

PDA is increasingly recognised as part of the autism spectrum.

Many children avoid demands to some extent, but children with PDA do so to a far greater level than is considered usual. This is why it is called pathological.

The main features of PDA are:

• Obsessively resisting ordinary demands
• Appearing sociable on the surface but lacking depth in their understanding (often recognised by parents early on)
• Excessive mood swings, often switching suddenly
• Comfortable (sometimes to an extreme extent) in role play and pretending
• Language delay, seemingly as a result of passivity, but often with a good degree of ‘catch-up’
• Obsessive behaviour, often focused on people rather than things.

Many parents describe their child with PDA as a ‘Jekyll and Hyde’. Many parents of children with PDA feel that they have been wrongly accused of poor parenting through lack of understanding about the condition. These parents will need a lot of support themselves, as their children can often present severe behavioural challenges.

Source: www.pdasociety.org.uk

Many children with ASC/PDA can behave very differently with different people and in different situations.  They may be able to sufficiently hide their difficulties within the school setting and in other setting such as when visiting relatives or going to a friends house.  This can cause real difficulties for the parents because may often feel not believed, not listened to and unsupported by professionals, friends and family members.  Also this ability to mask is often at the expense of behaviour at home where the child will release this pent up anxiety.

Source: pdaguidance.wordpress.com
This article also has links to relevant information on PDA.

When reading about PDA it was like a ‘light bulb’ moment,  I’m still currently struggling to define between Lou’s difficult behaviour being due to a sensory issue or just defiant behaviour like maybe another 4 year old may also experience?

In relation to the PDA symptoms:
– Lou resists almost every ordinary demand or request (as discussed for ODD,) I find it difficult as to why she laughs and smiles when refusing to hold onto the pushchair when walking next to the road, or when she laughs and runs away wanting to be chased when it’s time to leave the park.
– Lou is very sociable, I’ve discussed in previous posts how she’s friendly to everyone and anyone, she is able to use language to impress, she copies a lot of my language and seems to be ‘an old head on young shoulders’ although she doesn’t always understand what she is saying.
– Lou has definite mood swings, she can go from really happy to angry in a few seconds. She gets extremely frustrated if things do not go her way, for example,  if she can’t get clothes off her dolls, she will fight to do it and make grunts and screams instead of asking for help. Lou will go from rolling around on the floor in full meltdown mode, to saying “I’m calm now” only a minute later!
– Lou absolutely loves role play and she will pretend to be ‘Princess Anna’ and ‘Queen Elsa,’ she talks to herself a lot and will repeat phrases she’s heard from role playing with other children. I would say that Lou does live in a bit of a fantasy world, and I can relate to this totally! I used to create senarios where I was a certain character, I was obsessed in fantasy films, and books and still am to this day!
– Lou is obsessed in Moo, she simply cannot leave her alone! If she can hear that Moo is awake from a nap she rushes upstairs full steam ahead! If they are in a room together she has to sit right next to Moo, almost sitting on top of her!

I was interested to read the article: ‘Child masks difficulties in school’ (link above,) I immediately thought “this is Lou” the fact that children with PDA can behave differently in different situations is fascinating, this is my child! Lou masks her difficulties in her childcare setting, she is better at people’s houses like my parents,  but still shows some difficulties. If I am present her behaviour is more extreme, Lou will release her anxieties from the day as soon as she reaches home. This is the reason that I’ve been fighting since Lou was 18 months old, as it has been our parenting skills that have been scrutinised constantly. I have discussed this frustration many times through previous Blog posts, and so to receive reassurance through articles, puts my mind at rest. We are extremely lucky that Lou’s new school for September are completely on board and recognise that support can be given at school so that her time at home will hopefully be more positive. I was so relieved to hear this and very greatful !

This research has proved to me even more than every behaviour has a reason, this has helped me to understand Lou more and proves to me even more that ‘research is key, knowledge is understanding.’

 

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 A girl after my own heart! “Mummy I’m just reading this story!”

Thanks for reading 🙂

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Extreme Jealousy

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Research series
Our experiences of sibling jealousy or Rivalry.

Sibling Rivalry
What is sibling rivalry?
“Sibling rivalry is the jealousy, competition and fighting between brothers and sisters.  It is a concern for almost all parents of two or more kids. Problems often start right after the birth of the second child.”

Source:

www.med.umich.edu

We didn’t tell Lou she was going to be a big sister until I was noticeably pregnant. At about 6 months pregnant we broke the news and soon noticed a change in her behaviour. Until Moo’s birth in March 2015 Lou was the only grandchild on my side, she was the apple of everyone’s eye and was used to an audience of people with their undivided attention on her.

When Moo was born Lou had little interest in looking at her when we first brought her home. Lou was given ‘Big Sister’ T- shirts and cards to make her special. People would ask her “have you got a baby sister?” “Are you a big sister?” And “what’s your baby sister’s name? Lou would change the subject and talk about something entirely different. Sometimes she would say “baby” but she wouldn’t say her actual name for at least 6 months after her birth. Lou’s behaviour at home was tricky, she would rock the moses basket rigorously and attempt to tip over the bouncer chair that Moo was sitting in. I literally couldn’t take my eyes off them for a second. Lou started to get angry and throw objects so I’d have to shut myself and Moo inside another room behind a stair gate. I would need to watch carefully as Lou would try and grab Moo’s tiny leg if I walked past with her. I tried everything to include her with helping with bathing and getting Moo dressed, fetching nappies etc, and helping to give a bottle, but there was little or no interest. I was told that Lou has started to draw her family, she said “there’s mummy, there’s daddy and that’s Maisie Moo” – finally saying her name, Moo was drawn in black and myself, daddy and Amber were coloured blue. Lou was toilet trained before Moo was born but she did regress once Moo arrived, she wanted to have a nappy on and be “changed like a baby” as she said. We also would get the sitting down in the middle of the path as there was jealousy of Moo being in a pushchair and Lou was a big girl walking. Not even the addition of a buggy board would convince her!

I did wonder if Lou would get better once she realised Moo was here to stay! She would try and sit across people that were holding Moo, even though everyone was careful to ensure that Lou wasn’t left out. She would say “my mummy” if I was giving Moo a cuddle or a bottle and would launch the bottle away across the room. When Moo got to the age where she started crawling I’d have to act as a referee as Lou would try and pull her legs and flip her over. She wouldn’t have a clue that she was hurting her sister, even if Moo cried. Once Moo started walking I’d hope the situation would improve but the rough-housing seems to be more frequent. I will start a game and Lou will just randomly try and pick Moo up and wants to drop her, I’m unsure what her motive with this is as if I try and talk about her feelings on hurting Moo she will change the subject onto something completely different.

It is heart melting to see some great sibling moments and we really praise for times like these, Lou has a kindness towards Moo which I’m trying to build on more each day, she will break a biscuit in half and say “look mummy I shared!” I am also building on a special time of each day where I have quality 1:1 time with Lou, usually during Moo’s nap time, where I have been including activities for Lou’s ‘Sensory Diet’ including a lot of tactile and messy play. I am currently going through having to reassure Moo when Lou approaches her as she is afraid that she’s going to get hurt if she even goes near her as it’s happening so frequently, I don’t want Moo to be afraid of her sibling so I’m working on Lou using ‘kind hands’ all the time. We are still in the early stages of this. It is with great hope that the 2 girls will grow to have a positive sibling relationship we hope they can eventually share a room without Lou constantly waking Moo up! I’ve had people ask me if they think that Lou’s difficulties wouldn’t be so prominent if we’d decided to have Moo later than a 3 year gap, I was quiet taken aback, but I do think the longer Lou would have had with us and the family alone, then the harder she would have found it to accept Moo as a part of the family. I just think she’s a child who finds it difficult to share us.

I found that ‘The Sibling Support Project’ provides support for siblings of children with health, developmental and mental health concerns:

www.siblingsupport.org

I also sourced some books about having a new baby in the family from our local library, which can also been bought online, such as from Amazon:

New baby book

New baby book

And a book for parents – another to add to my wish list which us ever – growing!

Sibling Rivary

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Spectrum Sunday

“Mummy I’m hungry”

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.

From:

SPD Life

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.

Thanks for reading 🙂