Mixed Neurodevelopmental disorder

Sophie, Jen, Andy and Bob attended an appointment with a Doctor Rashmi Adiga a child psychologist for what we hoped would be the start of a general reassessment, however unfortunately it was most unsatisfactory.

Dr Adiga had quite obviously not done her homework, she asked inappropriate questions in front of Sophie regarding her biological parentage, as Sophie’s biological Father is not allowed contact with her. At this stage of her life, Sophie has not been informed of him, because of her lack of understanding.

A teachers assistant was called in, we had no knowledge of who this teachers assistant is, she never introduced herself and has never attended an Annual Review.  Her input was unhelpful and misleading, according to her Sophie is perfect at school and all the problems are caused by her brother. At the moment Sophie is fixated with her brother, her brother is not blameless, but he is not solely responsible.

The report by Dr Melanie Bruce and Dr Bakka was ignored and not taken onboard.

Dr Adiga said none of the symptoms described were consistent with ADHD, and we had to make a suggestion about the possibility of Autism, she then said she would send out a questionnaire.

Dr Bakka specifically asked for support with bedwetting and this was never bought up.

The meeting was unsatisfactory and offhand and Dr Adiga couldn’t get rid of us fast enough.

Dr Adiga did suggest it could be Mixed Neurodevelopmental disorder 

A neurodevelopmental disorder,^[1] or disorder of neural development, is an impairment of the growth and development of the brain or central nervous system. A narrower use of the term refers to a disorder of brain function that affects emotion, learning ability and memory and that unfolds as the individual grows. The term is sometimes erroneously used as an exclusive synonym for autism and autism spectrum disorders.
Disorders considered neurodevelopmental in origin, or that have neurodevelopmental consequences when they occur in infancy and childhood include:

• Autism and autism spectrum disorders such as Asperger syndrome
• Fetal alcohol spectrum disorder
• Traumatic brain injury, (including congenital injuries such as those that cause cerebral palsy^[2])
• Communication, speech and language disorders
• Genetic disorders, such as fragile-X syndrome
• Down syndrome.^[3]

Neurodevelopmental disorders are associated with widely varying degrees of mental, emotional, physical, and economic burden to individuals, families and society in general.

There are many causes of neurodevelopmental disorder, which can range from deprivation, genetic and metabolic diseases, immune disorders, infectious diseases, nutritional factors, physical trauma, and toxic and environmental factors.
Some neurodevelopmental disorders—such as autism and other pervasive developmental disorders—are considered multifactorial syndromes (with many causes but more specific neurodevelopmental manifestation).^[4] However other multifactorial syndromes such as Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS) are presently thought to have a more specific primary causation as well as a specific neurodevelopmental manifestation.

Sophies Annual Review

Today we attended Sophies Annual Review, present were Martin her Class Teacher and Joe the Deputy Head and someone from admin taking notes.

It started off with a Powerpoint presentation of Sophie, Sophie talked us through it.

Then Sophie went back to class.

Academically Sophie is doing very well - she is in the top set for Maths, and middle set for Literacy.

The areas for concern are her occasional behaviour and bouts of temper, these are causing occasional problems in class which are being dealt with, through circle time and discussion, there has been occasion that Sophie has needed restraining.

Also the way she deals with relationships and friendships and tried to manipulate her peer group to get her own way, this is going to be worked on.

They were interested in her interest and questions about the Bible and God, they have asked Joella Nash if she can spend time with Sophie to discuss her bible questions,  Joella has taken a service in our church and has met Sophie.

Churchill Park at the Paralympics 2012

On 5th September 4 students visited the Olympic Park to watch the athletics.  Among the lucky students was Sophie.  They were taken by Martin and Joe.

The students met at King's Lynn Station at 6am and travelled down to London.

They arrived at the Olympic Park at 9am and watched the athletics from 10.30-12.30.

They saw David Weir win his heat and recieve his Gold Medal.  They joined in singing the National Anthem and did the Mexican Wave.

After the athletics had finished they caught a tube into London and did some sightseeing.

They saw

The London Eye
Big Ben
Statue of Churchill
Westminster Abbey
Buckingham Palace
Pigeons at King's Cross

They had a great day and returned to Kings Lynn at 6.30pm.

Holiday at The Oakes

Sophie, my 12 year old grandaugher, has Dyspraxia, including verbal Dyspraxia, and so with the support of Jean and Andrew we encouraged her to go to The Oakes Holiday Centre, with me going as her carer and support network.


Monday 27^th August

This morning I went to work, I left early at 2pm, to get ready to take Sophie to the Oakes Holiday Centre.

Andrew and Jean Holland, collected us at 3.30pm in the Docking Community mini bus, with Courtney  (Monica Burtons Granddaughter) and Jude and our only boy JJ, we stopped at Wisbech to pick up another girl Lucy.

After an uneventful journey we arrived at The Oakes just past 7pm.   We were shown our room,  Sophie had a bunk in a 6 bed en suite room with Courtney and Jude.  I was the only person in a twin bedded en suite room complete with kettle, mugs, tea, coffee, hot chocolate and biscuits, as well as ear plugs.

We unpacked and the girls introduced themselves to other room mates, then we went to the dining room  and enjoyed Pizza for tea.

The theme of the holiday is the Olympics, surprise surprise, where they could win Bronze, Silver and Gold Medals, they were put into teams.

There were 4 teams

Spain

Brazil

Australia

Canada

Sophie was in Spain, they were given lanyards with their ID on.   The leader of their team was Chloe and Holly.

After tea, they got into their groups to get to know each other, then followed an Olympic quiz. I thought quiz was a quiet activity but oh no, the noise you wouldn’t believe.

It seems the tradition during meal times that they all sing a song to a team leader, changing the name each time,

Sing a song Chloe

Sing a song

Sing a song Chloe

Sing a song

We won’t shut up

Till you stand up

Sing a song Chloe

Sing a song

This gets louder and louder, until the leader in question stands up and sings a short song, if the song is a popular one they chant

Encore

At 10.30 I went up and said good night to Sophie.

Tuesday 28^th August

The day started with CBS (Campers Bible Study), complete with hot chocolate to go with it.

Then we had Breakfast of cereal and Bonus Breakfast Pain au Chocolat.

We then had a bible meeting with Andy, which was very noisy and vibrant, where there were bible readings, songs and prayer.

They then split into five activity groups, 

Beijing

 Sydney

Barcelona

Athens

Atlanta

 Sophie was in Beijing.

They then went off to take part in 5 activities

Rope Course

Climbing Wall

Rafting

 Archery

Craft

Sophies first activity was the rope course, I didn’t stay with her , because I felt she needed the challenge, I later learned that she took part in some of the course and was so proud that her trainers got muddy.  Sophie was introduced to a young man named Pete who was a volunteer, and he had dyspraxia, dyslexia and was blind in one eye, and he told Sophie he had done all the  activities.

After a short period of free time we had lunch of  Wraps, chicken, salad, and crisps, with a chocolate bar.

This after noon they had Dorm Time which is where the dormitorys got together in a group to fill in a workbork called Jesus Lives discuss and ask questions of the bible.

Then came Activity Two this time Sophie’s activity was the Climbing Wall, when I spoke to her later, she said it wasn’t too high and she did some and enjoyed it.

Then they played a game David and Goliath, which consists of them running around and avoided being hit by soft frisbys, it was nice to watch Sophie joining in.

Then we had Tuck Shop in the Cellar, where they could spend pocket money on sweets and drink.

Shortly after that we had tea of Fish Fingers, peas and chips followed by ice cream sundae.

Then there was another bible meeting time, with some more noisy bible study, followed by Water Balloon Volleyball, and a variation of the game, rock, paper,  scissors.  We then had a bonfire with songs and stories, accompanied by hot chocolate and marshmellows, it was a lovely night for a bonfire, a clear sky, full moon, and bright shiny stars.

Camper of the day’s prize was to choose 4 leaders, who knelt on the grass in a row , the winner had a bucket of water and a cup and from behind could pour water on the leaders by sprinkling with fingers, using the cup or the bucket.

Then at 9.45pm it was bedtime.

Wednesday 29^th August

We started off with CBS (Camper Bible Study), then we had breakfast of cereal and Bonus Breakfast of Pancakes and Toffee Sauce.

It was then time for the Bible Meeting, then was supposed to be Activity 3 which for Sophie was Rafting, but because of torrential rain this was halted, and substituted with indoor games.

We then had lunch of DIY Sandwiches and yoghurt.

This afternoon we had Dorm time to discuss and ask questions of the bible.

Followed by the postponed Activity 3, where Sophie  took part in Rafting, she wasn’t keen on the canoeing, so paddled in the pond and was proud of getting wet.

Then the game Diving 4 Gold was played, there were 4 paddling pools with gold medals in that they had to try to get, and they all got extremely wet.

However, after rafting, Sophie disappeared, apparently she was having a shower and couldn’t get out.

Then came FREE Time  with Tuck Shop and Ice Cream for sale.

This was followed by Workshops, there was a choice of 5 sessions

2 Ways 2 Live

Suffering

Bible Overview

Active 4 Christ

Peer Pressure

Sophies choice was 2 ways to Live, which explained about Why to follow God, they were given a booklet Who will be King,  after the session Sophie went into question mode and was asking one of the leaders, how can she speak to God and hear him, then somehow it moved to what Heaven and Hell is like.

Then we had Dinner which was Pasta Bolognese and Mars Bar Mousse.

Then being our last night this followed with Party Games and a Cocktail Bar, with fruit drink concoctions.  They went to bed about 11pm, and then had a Midnight Feast!!!!

Thursday 30^th August

Once again the day started with CBS (Camper Bible Study), then we had breakfast of Cereal, Toast and Breakfast Bonus Chocolate Donuts!!!

Then we had our Final Bible Meeting.

And moved on to Activity 4, which for Sophie was Archery, which she had looked forward to doing, and she managed to hit the target.

Then it was time to clean up, pack our bags and take downstairs.

We then had lunch of Hot Dogs, Potatoes and Salad followed by Ice Lolly.

After lunch, the children all filled in a postcard, which asked them to fill in,

Who to pray for (Sophie said Uncle Steven)
What did they like best (Sophie said Food and Rafting)
What did they learn about the Bible (Sophie said That Jesus is King)
What friends did they make

This postcard will be posted in about a month to Sophie.

Then they had another Dorm Time, followed by Looney Olympics Competition.

Then came the time for Goodbye, the competition winners were

Australia

Spain (Sophies Team)

Brazil

Canada

We visited the shop and Sophie bought a Purple T shirt and a book called Sophie’s World.

And another safe journey home with thanks to Andrew and Jean.

We got home at about 8.15pm.

During the holiday i decided to give Sophie some space and interfere as little as possible thus challenging her out of her comfort zone, Sophie succeeded in tackling some of her gremlins while i caught up with lots of cross stitch and did some reading

It was a good holiday all the children including Sophie thoroughly enjoyed it, and i have to sincerely thank Andrew and Jean for making it all possible.

About 9.15pm this was posted on Facebook by Sophies Mum - Sophie Smith has just got back from the oakes i think she may have enjoyed herself she hasn't stopped talking yet.

Lets go fly a kite

This morning we headed off to Hunstanton Kite Festival, as i have a stall booked in the craft fair for my cross stitch kits.

It was another hot hot day, but trade was disappointing only sold 1 kit, but quite a few people looked and leaflets went.  However, we did design, sew and made a cross stitch key ring, during the day.

It was a pleasant day till they end. when Sophie refused to take Dylan to his mum, he got upset, then she got angry and violent, Andy and Jenny ended up packing up the Rainbow Stall earlier than they would have.

Jude went to see steven on the bus with charlotte while mum had Miles. This seemed to go ok, Jude says steven is ok and in good spirits.  Having spoken to mum, she is struggling with Miles he has grizzled and cried all afternoon.

On speaking to steven this evening he is fed up and the day has been very long.

This evening I watched

 X-Factor

Series 9 - Episode 1

 It’s the first of several weeks of auditions and the press has already run stories of diva-ish behaviour from a few contestants, despite the change in rules that is presumably aimed at turning The X Factor into a more serious singing contest like The Voice. This time anyone over the age of 16 can enter, even if he or she is already an amateur artist and currently has (or has had) a management deal.

New girl joining Gary Barlow, Tulisa and Louis Walsh on the judging panel
is gorgeous Nicole Scherzinger, onetime Pussycat Doll, although in the pre-boot camp stages there is a succession of guests including Geri Halliwell. 

 Countryfile

On a visit to Grizedale Forest in the Lake District, Julia Bradbury discovers why the area is a haven for mountain bikers and John Craven witnesses the end of a project to release red kites into the countryside. He also explores the legacy of artist and social commentator John Ruskin, while Tom Heap assesses the future of dairy farmers and Adam Henson learns whether he stands to make a profit on his harvest. 

Silent Witness

Series 15 - 11. And Then I Fell in Love - Part One

11/12. Part one of two. Nikki sees a barefoot girl being knocked over by a car, marking the beginning of a case that takes the team into the harrowing world of sex grooming and teenage prostitution. The police know the girl has been abused and suspicion soon falls on her stepfather. Meanwhile, an early-morning bath saves Harry's life, and two puzzling corpses are brought in to the centre - a heavily tattooed man and a decomposed body found at the airport. Guest starring Sanjeev Bhaskar (The Indian Doctor), Elyes Gabel (Casualty) and Madeline Duggan (EastEnders). 

 

Dyspraxia

When Sophie was in pre-school, she was diagnosed with Verbal Dyspraxia. When she was 7, the family was informed that she would never speak intelligently and a year later she was transferred to a Special Needs School. Over the last few years there has been an amazing improvement in Sophie’s language. 

However, as Sophie’s skills developed, other Dyspraxia symptoms started to develop. Some of the symptoms are behavioural. She is very jealous of her brother, loses her temper, asks probing question and won’t give in till she gets a satisfactory answer.

These are all symptoms of Dyspraxia.  The family would like to take this opportunity to thank Union for their support of Sophie. She is due to see a Doctor at the hospital shortly to be re-assessed.

What is Dyspraxia?

Dyspraxia is generally recognised to be an impairment or immaturity of the organisation of movement. Associated with this may be problems of language, perception and thought. Other names for dyspraxia include, Clumsy Child Syndrome; Developmental Co-ordination Disorder (DCD); Minimal Brain Dysfunction: Motor learning Difficulty; and Pereceptuo-motor Dysfunction.

What is Verbal Dyspraxia?

Speech may be immature or unintelligible in early years. Language may be impaired or late to develop. The primary difficulty is in making and co-ordinating the precise movements, which are used in the production of spoken language, which results in severe and persisting speech production difficulties. The condition is termed developmental verbal dyspraxia: it may occur in isolation or in conjunction with general motor difficulties.

Below are some symptoms of Dyspraxia, these are by no means exhaustive.

• Is late in reaching milestones e.g. rolling over, sitting, standing, walking, and speaking
• Has difficulty in keeping friends; or judging how to behave in company
• Has difficulty in walking up and down stairs, Poor at dressing and personal hygiene.
• Reacts to all stimuli without discrimination and attention span is poor
• Unable to remember and /or follow instructions, Is generally poorly organised
• High levels of excitability, with a loud/shrill voice, Unable to stay still
• Tendency to become easily distressed and emotional and prone to temper tantrums
• May constantly bump into objects and fall over
• Continued messy eating. May prefer to eat with their fingers, frequently spill drinks, Problems with co-ordinating a knife and fork
• Persistent language difficulties (as Sophie says ‘I don’t like hard words’)
• Sensitive to sensory stimulation, including high levels of noise, tactile defensiveness, wearing new clothes
• May be slow to respond and have problems with comprehension
• Limited concentration. Tasks are often left unfinished
• Difficulties in adapting to a structured school routine
• Sleeping difficulties, including wakefulness at night and nightmares
• Physical symptoms, such as migraine, headaches, feeling sick

What an awful day!!

First thing this morning Jan rang up Sophie wasn't coping on guide camp and she was fine during the day but during the night was disruptive and a serious problem, so after work Bob went to Huntingdon to collect her.


Had a call from Tracy Illiana has got a burnt arm as she pulled some tea over it.

And i am in terrible pain with my left arm again!!

Steven had a doctors appointement and they upped his anti depressants and gave him a sick note for 2 weeks, he is worried about how that will go down at work.

To Stand To Blow and To Engage

Today I sat Ili in a box and she stood up for the first time on her own.

Today is Sophies 11th Birthday for her birthday we bought Sophie,

The Big Book of Faith Questions
What do Christians believe?
This beautifully illustrated book is packed with answers to questions a child might ask about God, Jesus, the Christian faith and many topics, including money, communion, suffering, the Bible, sin, living God’s way, Jesus’ death and resurrection, e.g., Did Jesus really die? What happened after Jesus died? What did Jesus’ death achieve? And How can I be forgiven? the Holy Spirit, prayer… and many more…
The 112 answers are clear and biblical, with references to the relevant Bible passage when appropriate and with an expansion or explanation underneath.

and

TOPZ Guide To The Bible

Written for 7 to 11 year olds, the Topz Guide to the Bible presents exciting and stimulating ways to become familiar with the Bible and appreciate the different aspects of God’s Word. With a blend of colourful illustrations, fun cartoons and lively writing, this is the perfect start for children to get to know their Bibles.

Guide Bear and Guide Badge

as she had guides we went down to Jens around 4pm to surprise Sophie on her birthday, we had a nice simple buffet tea.

Sophie had Guides on her birthday and went with her new Guide Bear I bought her.

Micheal today all of a sudden had heard that the Engagement ring he had ordered for Hana had arrived so he rushed off into Kings Lynn to get it, very much in secret (sssshhhhh although i guessed), and when he came back he banished Hana and cooked her a special candlelit meal, all very romantic.

Sophie is now a Guide

Sophie made her Guide Promise tonight, she is just so grown up, and a delight.

She has been through trials and tribulations, still has problems but we are getting there.

Comment made by Jan her Guide Leader on Facebook.

She was a star and made her promise beautifully. Great to have her as part of 1st Hunstanton Guides. ;o)

Sophie is now a Guide

Sophie made her Guide Promise tonight, she is just so grown up, and a delight.

She has been through trials and tribulations, still has problems but we are getting there.

Comment made by Jan her Guide Leader on Facebook.

She was a star and made her promise beautifully. Great to have her as part of 1st Hunstanton Guides. ;o)

Sophie in a lot of Bovver

The end of term saw Sophies teacher Ms Elwood last day at school, This has disturbed and upset Sophie, as a result it has caused behaviour issues, she doesn't want to go to school anymore, wants to go back to Redgate or start Smithdon, she has been very upset.

Sophie in a lot of Bovver

The end of term saw Sophies teacher Ms Elwood last day at school, This has disturbed and upset Sophie, as a result it has caused behaviour issues, she doesn't want to go to school anymore, wants to go back to Redgate or start Smithdon, she has been very upset.

Sophies Health

As Sophie grew it became apparent that she had a serious speech problem, eventually this was diagnosed as Verbal Dyspraxia, after sending letters of complaint to the press and Norfolk Primary Care she eventually, when she was 7 got weekly speech therapy, this was 2 years after she was promised it, her speech therapist was Amanda Lofts and after 3 years of speech therapy Amanda left as Sophies School Churchill Park had there own speech therapy department.

Sophie and Amanda
Sophie has had additional problems her inability to make herself understood has led to temper tantrums, anger and frustration which has caused distinct behavioural problems.
Copy of Letter sent to Head of Speech and Therapy Dept and Press, after the letter Sophie started getting regular speech therapy the letter was sent 19th March 2005.
My Granddaughter, Sophie, is a pupil at Hunstanton Infant School and will be celebrating her 6^th Birthday in June.
 Unfortunately, she has a problem, in that she is still not speaking. Her understanding and hearing are perfect, there are no problems there and never have been. However, she has been diagnosed as having Verbal Dyspraxia.
 We are most concerned in that she doesn’t seem to be getting the support she needs. The last time she saw her speech therapist was in June 2005. In November, the Head teacher at her school, Mrs Webb, got in touch with the Speech Therapy Department to find out what progress was being made, and was informed that they couldn’t find Sophie’s records.
 When Sophie saw a speech therapist her appointments were irregular and far apart. The emphasis seemed to be placed on her understanding of words. However, there is no problem whatsoever in this area, she is bright and understands most things. It is her ability to communicate that is the problem.
 The school has been very good, and Sophie has a one to one session daily for half an hour, teaching her sign language, but this is just another way of her being different she should be learning how to formulate sounds.  Sign Language is helpful but not necessarily the answer.
 The family has not been given any advice on how they can help Sophie in 2 areas:-

1. Helping Sophie to Speak
2. Helping Sophie to communicate using sign language, advising of any courses or publications that could help.

 I would like to point out that Sophie has never missed any Speech Therapy Appointments.
 What do I hope to achieve with this letter?  I don’t really know. Perhaps some advice on how to proceed in the future, as a family we are most concerned and feel there is more we could/should be doing. She has just had a baby brother, and she gets so cross and frustrated because she cannot make people understand, it is heartbreaking to see.

What is dyspraxia?

Developmental dyspraxia is an impairment or immaturity of the organisation of movement. It is an immaturity in the way that the brain processes information, which results in messages not being properly or fully transmitted. The term dyspraxia comes from the word praxis, which means 'doing, acting'. Dyspraxia affects the planning of what to do and how to do it. It is associated with problems of perception, language and thought.
Speech and Language
Speech may be immature or unintelligible in early years. Language may be impaired or late to develop.
For some children, the primary difficulty is in making and co-ordinating the precise movements, which are used in the production of spoken language, which results in severe and persisting speech production difficulties. The condition is termed developmental verbal dyspraxia: it may occur in isolation or in conjunction with general motor difficulties.