Ofsted’s latest focus

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A recent report by Ofsted (The Office for Standards in Education, Children’s Services and Skills,) was recently brought to my attention. This report is titled: ‘Unknown children – destined for disadvantage?’ (Published July 2016.)

After going through several Ofsted Inspections in a variety of settings, I am aware that Ofsted have varying ‘focuses’ to base their inspections on, not the whole inspection, but some aspect(s) that they like to focus on such, such as multicultural experiences, writing in boys, inclusion, and so forth.

Reading through this report, something just didn’t sit right with me, especially the term ‘disadvantaged.’ In this time of statistics, tick boxes and figures I thought to myself what if families didn’t fit into this box or category? What if there are exceptions to the rule? Take my own family for example:

  • We live in a council house – I’m not ashamed of this, our rented house was sold unexpectedly and we had to ensure that with a young toddler and baby on the way that we had a stable home, we couldn’t afford to buy or rent another house at that time. With only 1 adult in the household working, it was very difficult to find the money.
  • Our household not only has 1 adult currently working full time, it is seen as a ‘low income.’
  • My partner has moderate learning difficulties and very severe Dyslexia, making opportunities for higher paid roles extremely difficult.
  • I have a level 6 qualification, degree and postgraduate certificate but I have been unable to work full time since my eldest child was 2 years old, and since I’ve had my 2nd child.
  • I provide my children with the best possible experiences at home I can, such as craft activities, I read with the everyday and interact with them and ensure that they are well-cared for. I am fully involved in the process for assessments for my eldest child, I identified her additional needs at 18-months-old and sought advice and support, (even though not always believed!) I will be proactive and fully involved in the education of my youngest child also, attributing this to 13 year’s education experience.
  • We are parents, both offer our children different areas of knowledge, for example, their father is very practical and teaches the children how to construct, build and fix things, whereas I can’t even put a flat pack together!

Would Ofsted therefore class my children as ‘disadvantaged?’

I was relieved to read that as part of the Key findings: “While all of the local authorities, pre-school providers and schools visited could define disadvantage in terms of a family’s finances, the most effective went beyond this basic definition.” 

I am therefore relieved to know that not every setting based the definition of ‘disadvantaged’ purely upon a family’s income. But is this immediately what comes to everyone’s mind when the term is discussed?

Another interesting Key Finding was:

“There is a lack of understanding of what success looks like in tackling disadvantage.” 

How can ‘disadvantage’ therefore be tackled if the family’s sole earner is working to their best ability? Working sometimes a 60-day week but is still paid minimum wage due to their own experiences of education? I have tried to teach my partner to help him access courses to enable him to overcome issues with getting further up the career ladder, we are extremely busy people and we have a child who has additional needs who needs constant supervision at home. I have tried to help him gain access to college courses or courses run by local libraries but these are always run in hours of the working week and he has to be at work to earn the money! It is truly a viscous cycle!

2 Year funding: 

In the report there is a wide variety of what various Early Years Settings class as ‘disadvantaged children,’ such as:

  • Children who are eligible for 2-year Government funding.
  • Children who live in households that receive tax credits, income support, other benefits.
  • Children in receipt of free school meals (which I do find confusing as currently all children receive free school meals until the end of year 2!
  • ‘Poor’ education and health experiences.
  • Children who have witnessed domestic violence, or live in households where one or both parents have been identified as ‘addicts,’ either drug or alcohol related.

The follow statement unnerved me a great deal:

“These settings did not consider children who have special educational needs and/or disabilities, children who speak English as an additional language or summer-born children as also being disadvantaged.” 

Why should children with additional needs (as i like to refer to,) or who are ‘summer – borns’ be classified as ‘disadvantaged? When there are always, always exceptions to these circumstances?

The following key point I did find alarming:

“One pre-school setting attached to a children’s centre had an agreed policy about the circumstances in which a child and their family would be regarded as ‘at a disadvantage’. This included children who were:

 showing poor speech and language for their age and stage of development

 being looked after by someone other than their parents, such as grandparents

 those whose family was known to be involved in crime

 those who had young or teenage parents

 those who had older siblings with a wide age gap between them.” 

Again, there are always exceptions to these, such as I wouldn’t see children who have an older sibling with an wide age gap as ‘disadvantaged,’ as there are indeed many families where this is a huge advantage. I also wouldn’t also assume that young or teenage parents’` children are ‘disadvantaged’ as I know some fantastic younger parents.

In terms of the Government ‘2 year old funding,’ our youngest child is due to start at a early year’s setting in April 2017, at the moment, and looking at our household income, it seems that she will be eligible for 2 year funding, however, would Ofsted then class her as a disadvantaged child? When I gain employment and we are no longer eligible for the funding will my child then become ‘advantaged?’ If  we won the lottery bought a house, had 2 adults with a full time income, more money in household, would this mean that my family would automatically not be seen as ‘disadvantaged’ anymore?

money-quote-margaet-thatcher

The county where we live sees ‘vulnerable learners’ are those summer born, developmental delay, come from split or large families, GRT (Gypsy, Roma, Travellers,) but again, I would always argue that there are always exceptions to these ‘rules.’

I get extremely confused by definitions and labels, I was told by the Strategic Commissioner for Early Help & Partnerships at Worcestershire County Council, on behalf of Cllr Bayliss (The Cabinet member responsible for Children and Families,) that we had “received our package of support,” in terms of Early Help Family Support, time and time again I have been told that they are now focusing on ‘targeted families,’ but what are targeted families? If my family is seen as ‘disadvantaged’ is this the same as a targeted family?!? The mind boggles!

 

 

My message in reflection is clear:

Dear Ofsted,

Please think carefully about the definitions that are used in your reports, please don’t tar everyone with the same brush, there are many diversions and exceptions to the rule of what you class as ‘disadvantaged.’ For example, please do not assume that because a family have a low income that the children will be less cared for or interacted with that those families that earn a moderate or high wage. Please don’t make this about money or class.

value-no-money-quote

 

All quotes used in this post have been taken from:

‘Unknown children – destined for disadvantage?’ (Published July 2016.)

Age group: 0–5 Published: July 2016 Reference no: 160044

which can be found online at:

www.gov.uk/government/organisations/ofsted

 

Thanks for reading 🙂

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Our Experiences of Therapy

file-3
In the ‘Calm Area.’

Play Therapy.

This time last year my daughter, Amber was still without an official diagnosis, we knew that she was a huge ‘Sensory Seeker,’ and I had noticed from an early age that she struggled with ‘purposeful play,’ even to this day, (at almost 5 years old,) and even though we provide her with a variety of toys and resources, she has difficulty in using them for story enacting, for example, she prefers to line her dolls up, rather than to come up with a situation or characters for them.

In April 2016, Amber was diagnosed with Sensory Processing Disorder (SPD,) around the same time I was introduced to a local therapy centre where hourly sessions of ‘Play Therapy’ were offered on a 1:1 basis with a SEN teacher, these sessions also welcomed parents to get involved with the activities on offer. The staff at the centre collected information about Amber’s current interests and ask for any problem area that we were experiencing at home, after each session the staff asked Amber what activities she would like to do in the next session and I really liked how child-centred this was. Amber also had her own visual choice board, where she could see the activities on offer and chose which activity she’d like to do 1st, 2nd and so forth. I explained that one of the areas that we were working on at home was eating, as Amber was only eating the same foods every day, such as breadsticks and toast, she tended to stick to the beige and dry foods. I also explained about what I had observed in terms of purposeful play at home and I shared Amber’s love of any messy/sensory activities as she was a huge sensory seeker and thrived on these type of activities.

I read that:

“Play therapy is generally employed with children aged 3 through 11 and provides a way for them to express their experiences and feelings through a natural, self-guided, self-healing process. As children’s experiences and knowledge are often communicated through play, it becomes an important vehicle for them to know and accept themselves and others. This approach is common to young children.”

Source: https://en.wikipedia.org/wiki/Play_therapy

Over the 15 sessions that Amber had we, as parents, saw a great deal of progress in Amber’s confidence to select new resources, at first she wanted to try out every single activity in the sensory room, and would often flit between activities and rooms. The therapy centre has 2 main cabins that house a sensory room and music therapy room, there is also a sensory garden that houses a chicken coup and their very own named pet chickens! The staff also have access to rooms for occupational therapy and a purpose-built room for cooking. We also noticed an improvement in Amber’s concentration and purposeful play, especially with small-world play and she developed an interest in playing ‘shops,’ which she has carried on to the present day.

Amber experienced a wealth of activities during her time at the centre, these included:

  • Messy Play – shaving foam in the water tray and hand and feet painting.
  • Moveable and mouldable sand.
  • Sensory room exploration – bubbles tubes, light changing wall, fibre optics and the ‘snug’ enclosed area.
  • ‘Magic Carpet,’ where images such as an interactive fish pond are projected onto the mat on the floor and moves when the children touch it.
  • ‘Small World’ play – with a large dolls house, farm buildings.
  • Use of the music room – exploring multicultural instruments such as African Drums.
  • Physical outdoor activities – such as balls and hoops, to help support perseverance.
  • Feeding chickens and interacting with them in their enclosure.
  • Creative story telling – using story sacks, e.g. retelling the story ‘Room on the Broom.’
  • Cooking sessions – making cookies, and staff even found a specific dairy free recipe in light of Amber’s dairy allergy.
  • Making sensory playdough.

 

We hope to continue to take Amber to the ‘Play Centre,’ (as she has named it,) as they also provide clubs in the school holidays, such as messy play club, dance club and gardening club.

I previously wrote a post dedicated to the specific centre that Amber attends, please find this in the link below:

smile-centre-malvern

 

Relaxation Therapy. 

Amber started an intervention at school in September 2016, when an outside agency comes to deliver relaxation sessions.

These “strategies mimic clinically-proven anger management and mitigation treatments such as therapeutic exercise and yoga, breathing exercises, and mindfulness exercises. These can be used as anger management tools, ways to help at moments of meltdown, or methods to make time-outs constructive rather than punitive.”

Source:www.relaxkids.com

 

Amber’s sensory processing difficulties and anxiety can manifest themselves though her displaying frustration, at home especially, (where she feels most comfortable to release the tensions and frustrations,) we experience a great deal of aggression in the form of hitting, throwing objects, shouting, climbing on furniture and rough-housing behaviours with her younger sister. If it gets to the point where Amber experiences a meltdown or sensory overload, (as I like to call them,) we use the techniques that Amber has been taught in her relation sessions at school.

This may be to ask Amber to lie flat onto the floor with a teddy on her tummy and count to 10, whilst breathing slowly in an out. We have also taught Amber to “smell the flower, and blow out the candle,” for a technique to help calm her. The most recent one she has learnt is to “Breathe in and imagine smelling the sweet hot chocolate. Breathe out to cool it down.” Which I quite like and will practice this at home.

 

Thanks for reading 🙂

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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

Family Fund 


I am in regular contact with Laura at Family Fund’s marketing department – I write monthly for the Family Fund’s Blog so I said that I would try and share this poster for them. 

Family Fund are a charity that provide grants, they provided my eldest daughter with Sensory toys and equipment and you can apply yearly. 

I have recently guided another family through the application process so please share if you know anyone who may benefit. I’m happy for people to email me for more info. 

sensorysensitivemummy@outlook.com

https://www.familyfund.org.uk/faqs/are-we-eligible-to-apply

Here’s a link to the story behind Lou’s grant from Family Fund: 

A Life Line for Lou

Family Fund are also on: 

Facebook

Twitter: @FamilyFund

When I saw the ‘Fever Effect’ with my own eyes


The first time I heard about the ‘Fever Effect’ was whilst watching the BBC Drama called ‘The A Word’ a drama series that I could relate to in many ways but also found it difficult to understand why the little boy called Joe would wander about his surrounding village in the mornings as I’m forever checking that Lou cannot get out of the front door – but that’s another story! 

During one episode Joe was ill and it mentioned the ‘fever effect’ – with Joe’s mother searching a great deal on the internet just as I do! Joe’s Autisitc traits seemingly disappeared for the day he was ill and I thought to myself how is this even possible? 

http://www.bbc.co.uk/programmes/

Yesterday when Lou’s daddy rang on his work break and when I rang my own mum to tell her that Lou and Moo were ill and I explained how different she was they both said: “it’s just like little boy on the TV programme.” 

Yesterday Lou: 

– was lethargic and slept around 4 times throughout the day – as opposed to sleeping from 7pm until 5am. 

– was still and happy to chill – as opposed to being constantly active and climbing onto furniture and bouncing off, etc. 

– was completely off her food – as opposed to shouting “I’m hungry” throughout most of the day. 

– spoke calmly to me and asked for things, such as: “mummy please may I have a drink.” As opposed to “get me a drink right now.” Or “you’re really stupid Mummy” (And said in an aggressive manner.) 

– When her daddy left for work in the morning she said: “Bye, bye Daddy I hope you have a lovely day,” as opposed to “Bye, bye you silly poop.” 

– No one shouted all day,

– Myself or Moo didn’t get hit all day, 

– Nothing got thrown, 

– Absoutely no sensory overloads all day,  

What we were left with without all these things was also a very anxious and tearful girly which did make me feel that I wouldn’t want this for her everyday. It showed me that Lou’s anxieties are normally most likely portrayed through aggression and hyperactivity. 

This experience does make think if the days after will be the same, however I was lead into a false sense of security the morning after Lou appeared to be still lethargic and off her food but later her aggressive manner did return, she was rough with Moo and started shouting and hitting out at me once again. I attempted to calm her whilst throwing items around the room and directed at me, to which she then started coughing and found it difficult to stop. We then had to talk through why it’s important to stay calm, especially when you have been unwell. Yesterday Lou had a temperature and was red-cheeked, the day after her temperature had returned to normal…

… I didn’t understand the ‘Fever Effect’ until I saw it with my own eyes. 

For more information about the ‘fever effect’ see the following link: 

www.autismspeaks.org
Thanks for reading 🙂 

Spectrum Sunday</div

Yesterday was an outstanding day…

…Yesterday was fairly unique.

The last time we had an entire day without a meltdown, or ‘Sensory Overload,’ (as I like to call them,) was on Christmas Day 2015. When these unique days occur I get a feeling of “is this where it all changes?” But I know in my heart, this was a ‘one-off.’ 

Yesterday Moo (22 months,) had a day with Daddy and it was just myself and Lou at home. We made Gingerbread biscuits and iced them, as this was related to Lou receiving a ‘Gold Award’ during her school assembly for creating a craft Gingerbread man for her homework.

We also looked at books, we watched ‘Zootropolis’ – which is quickly replacing ‘Rio’ as the film that Lou insists on watching everyday! And we watched all the way through – which is unusual for me as I’ve only ever seen the start and the end! We explored many of Lou’s new Christmas presents, such as ‘BloPens’ which she was very good at – mummy = not so good!!! 

Lou only had to be reminded once to listen or be calm from 10am until 5pm and I was astounded! Lou had my full attention without Moo, who she still has jealousy issues with. 

In comparison, today has been very tricky, we have been tested once again, spat at, hit at and shouted at. Lou has been extremely hyperactive, demanding and has found it difficult to stick to any type of activity. She has difficulty playing independently and choosing her own activities, and struggles to play alone – craving the attention of an adult every minute that she is awake. The girls have a wide range of toys – dolls, books, puzzles, small world, bricks, etc, but we have to give her a choice of 2 different activities. 

As Lou responds so well to a structured school routine, I am having constant battles in my head as to what to offer her at home, we do all we possibly can – I could sit with Lou the whole time she is awake but then what happens on the days when I’m alone with the girls and Moo isn’t given attention, this simply wouldn’t work. We would also have no clean clothes or dishes! We use visual timetables and explain everything that is happening, however, I am reluctant to turn my home into a school-type environment, with a routine for 7 days per week, surely a child’s brain will overload at some point?

I tried to do a few similar activities today and Lou wasn’t in the slightest bit interested, it proves what I’m always banging on about, that she has to be in a particular type of mood to respond to certain activities. 

Still, I will relish the outstanding day we had, the experiences we shared and carry on looking for the best methods that work for our brilliant masker girly! 

Thanks for reading 🙂 

We’re not alone in our struggle…

​A few months ago I saw an article on the Redditch Advertiser website, where I read about fellow ‘warrior mum’ who was fighting a battle to prove her innocence after being accused of faking her son’s autism.” Source: Redditch Advertiser 24/08/16.

Here is the original article I read: 

www.redditchadvertiser.co.uk

This lady’s story really pulled at my heart strings and I read more via her own Website: 

http://breakfasttree.com/

I realised how much I could relate to this lady’s experiences and she inspired me to carry on fighting, even though it’s well and truly exhausting.

After a huge battle to get an NHS diagnosis Bernardette sought a private diagnosis for her 4 year old son. I love the following quote from her website: 

“YES we have a diagnosis.
YES it was precisely the issue that we suspected.
AND YES… WE THE PARENTS WERE ABSOLUTELY FCKING RIGHT.” 

Source: www.breakfasttree.com

A private diagnosis found that Bernardette’s son had Pathological Demand Avoidance (PDA) as part of an Autistic Spectrum Disorder (ASD) 

Bernadette explains that she hopes to make more people aware of PDA. To avoid other parents going through the same difficulties that her fanily has suffered. She explains PDA really well in this post:

http://breakfasttree.com/asdpda-explained

A few days ago I saw on Bernardette’s Facebook page that sheis holding an art and spoken word event, which aims to expose the true harm caused by authorities to families with ‘unseen disabilities’ at Bromsgrove’s Artrix on Slideslow Drive.”

The event, which is taking place in the Artrix gallery, will run from Wednesday, February 1 to Sunday, February 26.

Source: www.bromsgroveadvertiser.co.uk Bromsgrove Artrix

I was honoured to be approached by Bernadette who asked if I would like to include our story in the exhibition. I wrote quite a long passage! But I thought I’d share our most recent time line here, It really made me think – this is why I’m always feeling exhausted and I could look back on how much we’ve actually been through in a short space of time. 

Here’s the time line of events: 

On 16th March 2012 our first child was born via Emergency Caesarean Section after suffering meconium in the waters and a drop in her heart rate. It was an extremely scary time…

…Our current journey started when my daughter was 18 months old (September 2013,) when I noticed that she was distressed by sudden and unexpected noises and would scream, she would seek out anything related to water, and keep taps running until the bathroom at the nursery was flooded. She was extremely active and screamed and got angry – when I discussed this with anyone I was told “It’s the terrible 2’s come early,” or “she’ll grow out of it, but she didn’t. I was working full time, my daughter was attending a childminder’s and nursery, I just got on with things.

  • May-August 2015 – Health Visitor wrote in a report questioning whether I had bonded with my child from birth – to which I said: “Of course we bonded – she’s my world – I think about her before myself everyday.” I asked our Health Visitor’s advice regarding her behaviour, she replied: “Well you know more about childcare than me, you’ve been in the job longer.” A few weeks later I saw the Health Visitor outside the GP’s surgery and she asked my daughter: “have you been naughty today? This professional was supposed to be supporting me in my darkest hour – my child’s behaviour was worrying me and I’d just had my second baby. I felt cheated after building up a rapport with this person. 
  • August 2015 – I wrote a letter of complaint to the local health visiting service (Worcestershire) to which they defended the actions of the health visitor, but also said that “lessons have been learnt.”

September 2015 – referred to ‘Early Help’ via our local children’s centre. We were then assigned a ‘Family Support Worker,’ and I was put on both ‘Family Links,’ and Triple P (PPP) Parenting courses. I have since learnt that this is the usual protocol if a parent identifies an additional need in their child. Since researching ASD and PDA for the past 12 months, I now know that the methods advised to use from the PPP course do not work with my child, who scores high on the online scales for PDA (from the PDA society website.) Family Support was given to us once a week, a lot of parenting strategies given and I took on board absolutely everything that was suggested. 

October 2015 – Starts a new Pre School, staff there noted observations of sensory processing difficulties and Sensory Processing Disorder (SPD) was first mentioned so I researched more via the Internet and publications. An Area SENDCo is mentioned but my daughter was not seen by this professional once in the whole 12 months of attendance, I was told this was due to SENDCOs being made redundant because the company Babcock International had taken over these roles at Worcestershire County Council. New Health Visitor noticed our daughter’s behaviour at home and said: “It’s not your parenting, I believe you,” actually puts a referral through to CAHMS that we thought was put in by previous HV.

December 2015 – Appointment at CAMHS Worcester, appointment with an Assistant Psychotherapist. Requested not to see our daughter so we attended with our youngest child. Outcomes basically from this appointment were that they were focusing on my anxiety and we were told to just “carry on with Family Support, as that seems to be working.” We left feeling very disappointed and I cried on the way home, after we had taken 2 buses to get there, and all this without even seeing my child. 

March 2016 – After the frustration of the CAMHS appointment, I started my own Blog that I named ‘Sensory Sensitive Mummy’ and opened up social media accounts alongside. I then connected with fellow SEND bloggers and joined many online support groups for the parents of children with additional needs. 

April 2016 – We saw Paediatrician for the first time who recognised that our daughter has ‘Sensory Processing Difficulties,’ with traits of ASD and ADHD, although she wouldn’t be tested for these until she has settled into school from September 2016, and that ADHD assessments are not usually completed until the age of 6. A referral was made to Occupational Therapy. Paediatrician also finds that my daughter has ‘Hypermobilty.’ “People with hypermobility are particularly supple and able to move their limbs into positions others find impossible. Joint hypermobility is what some people refer to as having “loose joints” or being “double-jointed.” (Source www.nhs.uk)

May 2016 – attended Play Therapy at the SMILE centre in Malvern, staff extremely supportive and encourage us to apply to the ‘Family Fund,’ a charity who provides grants to disabled or seriously ill children. I applied but wasn’t very hopeful. The Family Fund sent out an assessor to our home, and this person noted that she could see that our daughter was a huge ‘sensory seeker’ as she was attempting to launch herself off furniture. The assessor said “I’m going to recommend a grant for sensory equipment and 8 play therapy sessions and I really feel that your child will really benefit.” I was shocked when we were awarded the grant and cried a lot, in relief, as the equipment such as ‘bubble tubes,’ were out of our budget range. Encouraged by Health Visitor to apply to DLA to help with costs such as a ‘Weighed Blanket,’ which was to help calm our child during ‘Sensory Overloads.’ These blankets range at around £180. Refused 3 times for DLA, due to “need is not great enough.” Even though our daughter requires constant supervision. 

June 2016 – Bloods requested by Paediatrician to check for genetic anomalies in our daughter. 

July 2016 – told that the OT referral hadn’t actually gone through due to a “mix-up” our Health Visitor does the referral herself. 

August 2016 – Family Support ends due to us “getting on well.” I offer a ‘Sensory Diet’ throughout the whole summer holidays. Behaviour gets progressively worse throughout the holidays as she struggles without the education routine, behaviour at home includes: – Spitting in our faces – Shouting – Screaming – Hitting out at me, her father and younger sister – rough-housing younger sister – throwing objects – damaging property such as doors, walls (from slamming doors,) pulling stair gates from walls. Results from daughter’s bloods show a “copy number imbalance of uncertain significance.” A letter was sent out with details. No letter actually received until Oct 2016 when I requested from our GP. No actual genetic numbers given to explain the imbalance. Bloods requested from both myself and partner. 

September 2016 – Settles well into school, interventions offered such as ‘Relax Kids’ and ‘Sensory breaks.’ Some sensory processing difficulties noted by staff, in terms of processing time and sitting on the carpet. No sensory overloads seen at school. Behaviour at home continues to spiral due to the step up in what is expected after the jump up from Pre School to School, holding in sensory overloads all day and ‘exploding’ as soon as reaching home, overloads seen up to 10 times a day and some overloads lasting an hour until she is calm. Often takes both myself and her father to help calm her. I attempted to self-refer back to Early Help – Family Support to help at home – told that we “no longer qualify for this service due to government funding cuts, and that ‘targeting’ families will be concentrated on.” I was told to “ring the Autism West Midlands helpline and they can advise you further.” I attended a talk on ASD run by Autism West Midlands (advised to by staff at children’s centre,) which initally confused me, as we still have no formal ASD diagnosis, but what I gained from this was a lot of reassurance that my daughter was indeed displaying very similar traits to other children with ASD and I had my ‘Light Bulb’ moment regarding my own difficulties that I’ve had since childhood (where I have written a separate blog post on.) 

September 2016 – I stood up and talked about our journey at a scrutiny meeting at Worcestershire County Council directly addressing Cllr Marc Bayliss who is the ‘Cabinet Member with Responsibility for Children and Families,’ responsible for the decision on funding cuts, that resulted in us no longer receiving support at home. I later directly email him and his ‘officer’ Hannah Needham replied to me on Cllr Bayliss’ behalf, and told me that “you have received your package of support.” I hadn’t named my daughter in my email and I was angry that she had referred to my daughter by name, as well as delving into our records without my permission. This email completely ridiculed me. 

October 2016 – received appointment with OT who notices Sensory Seeking and difficulties with gross motor skills, offers to observe in school and gives advice at home such as a ‘Traffic Light’ behaviour system. OT assistant finds that school are ‘doing all they can.’ And gives them equipment such as a ‘wobble cushion’ to help support her listening during carpet times. Heard nothing about our blood tests until I chased, had tests. 

December 2016 – OT rings to discharge my daughter from the service although I share how difficult at home her behaviour still is and that we no longer qualify for family support at home. OT unaware of children’s centre cuts and advises to keep behaviour diaries to send to the Paediatrician. I constantly research ASD and PDA and talk to other parents who have children with the same. I try out methods that are used for children with PDA and my daughter responds to these methods such as avoiding the word “NO” and avoiding negative or demanding phrases (where possible,) more than the methods that I had previously been advised to do. I spoke to the school nurse to ask for advice on my daughter’s inability to feel full, that she is constantly asking and seeking food, and that she will rip off locks on the kitchen door to get to food, this professional advised that my daughter is under OT and that this should be the professional to offer advice.

January 2017 – Still fighting to be heard. Advocate for my daughter. Still waiting for blood test results… 

As you can see from this timeline of events, there has been a lot of passing the buck and loop holes in the system. How many more families are meeting the same fate? Especially if their child has an invisible additional need. I am very lucky to have linked up with fellow SEND bloggers and spoken to a lot of parents whose children show identical traits to our daughter, many of these children have a formal diagnosis of ASD/PDA. We know of another family who have a daughter so identical to our child, they could be twins! If our health visitor and the Family Fund assessor could see what I do –  why am I not being listened to or believed? What’s different about our case? Do they think it’s still my parenting after all this time? Am I exaggerating, making it up? I often think to myself after my daughter has had a serious sensory overload, “I simply couldn’t make this up, why would I want to?” We are not in this for the money – we don’t qualify for DLA! I am simply fighting for support for our child, to act as her voice, to ensure that she doesn’t have to go through the same struggles as I did – all the way through my school life and beyond. 

Bearnadette has started a petition to help spread awareness of ASD/PDA, please sign and share to prevent other parents and their children slipping  through the net and being misunderstood: 

www.change.org

Thanks for reading 🙂