Avonreach Academy Trust proposed change of age range ~ my response 


Last week I was given a copy of the following consultation: 

http://www.avonreach.org

This is my response to the proposals to add year groups into a few local schools and the implications it will have on my family and others who attend the same school as my children.

Avonreach Academy proposed consultation – Age Range.

Dear Sir/Madam,

I have recently been made aware of the proposals to change the structure of the Avonreach Academy schools. In particularly the 2 schools of Pershore High and Cherry Orchard First, in Pershore will have implications for my children. Both of my children, age 2 and 5, are based at the Abbey Park campus in Pershore, with one in the Pre-School and the other in the year 1 class in the first school. We moved to the Cherry Orchard area of Pershore in September 2017 to a more appropriate house for my children’s needs, my eldest child is being assessed for Autistic Spectrum Condition (ASC) and my youngest has sensory processing difficulties and Hypermobility. We were turned away from Cherry Orchard first school as there was not a place for my eldest child at the school, it has actually been a blessing that Abbey Park schools could accommodate both my children as my youngest child has started at the Pre-School on site and will remain on the same campus until she reaches the end of year 7 at Abbey Park Middle school. As a family we like the idea of the Abbey Park family of schools, both of our girls thrive on consistency and familiarity and I want them to remain on the Abbey Park campus of school as long as they can.

Children in the Cherry Orchard area of the town have traditionally attended Cherry Orchard First school and then go on to attend at Abbey Park Middle school. This 3-tier system worked for myself as I was one of 4 children that came from a small village first school (Upton Snodsbury First,) and by attending Pinvin Middle school for 3 years this helped me a great deal, I simply wouldn’t have coped moving from a primary school straight onto a high school.
As you may already be aware of the volume of new houses that are going onto the new housing developments just off Station Road and Wyre Road in Pershore, it should not be the later years (years 5 and 6,) that need to be concentrated on when these children are already catered for at Abbey Park Middle, it is clearly the younger years, like at schools such as Cherry Orchard First that need to be extended, as it is the catchment school for the new families moving into the new developments, surely a priority should be extended the earlier years from Reception to Year 4, and ensuring that new families moving in can get a place at their catchment school, rather than adding on an extra 2 classes in the later years?
There is a small section in the consultation’s ‘frequently asked questions’ regarding the extra volume of parents and children to the school. As we live in the Cherry Orchard area of Pershore, we cannot even walk the same side of the school at drop off and pick up times as cars cover the street and parents waiting for the school gates at Cherry Orchard First completely cover the path and it is impossible to get my child’s buggy down through the crowds. With adding any more children to the school this situation needs to be carefully considered as it is a real safety issue.
In summary, rather than changing what we already have, why is there not a new first school being built to accommodate all of the new families moving into the area? I am under the impression that this will also affect schools such as St Nicholas Middle in Pinvin, and St. Barnabas Middle in Drakes Broughton? Our 3-tier system works well so why bring around change that will cause so much disruption? Yes, we will be like Worcester area schools with the 2-tier system, but shouldn’t we be proud of our unique system that has worked for so many children previously?
Thank you for your time,

Miss Nicola Perrins BA (hons) EYTS. 

If anyone local to the Pershore area (Worcestershire) wishes to also share their views you can also email our local councillors: 

Harriett Baldwin: harriett.baldwin.mp@parliament.uk

Liz Tucker: ltucker@worcestershire
Thanks for reading 🙂 

My ‘Rainbow Brain.’

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I didn’t even realise that my brain could be described as ‘Neurodiverse’ until almost a year ago. Even though I have always felt ‘different’ even as a child.

I have a Love-Hate relationship with my ‘rainbow brain’ as I like to refer to it! Sometimes I can be sailing along quite nicely, feel OK and confident and then BANG something goes wrong and the ‘red mist’ descends, and then I ‘explode’ like a volcano!

 

The reasons why I love my rainbow brain:

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  • Because I have finally learnt to embrace my ‘differences,’ rather than being a ‘sheep’ and copying what others say or do, I had spent so long referring to myself as ‘the weird’ girl, but now I rather be myself than a clone of others, or how people ‘think’ I should be.
  • Because I have learnt to ‘find my tribe,’ I have support groups online to thank for this, belonging to a group of ‘Mums on the Spectrum,’ where you can write anything and lots of people will report, relate and advise.
  • Because I have the ability to ‘hyper-focus’ on particular topics or interests, and I find a lot of joy in this. I love photography, seeing patterns in the environment and I love my ability to focus on research and study and the buzz I get from learning. I love finding out facts and information, which is something that I have carried from my childhood.
  • Because I’m completely dedicated to my children, I never thought I could think about 2 other people more than thinking about myself, I learn through my children and they’ve taught me to adjust from self-thinking and self-being, although sometimes I still find it difficult to tap into sometimes. My rainbow brain has the ability to tap into 2 girls who also have ‘rainbow,’ or Neurodiverse brains. I feel things like they do and see things like they do, it is hard to get this across to some people but I am trying!
  • Because of my brilliant and long term memory – I see everything in pictures and memories will crop into my head with the ability to see that scenario or event as it happened, the colours, what people were wearing, etc. I can remember a lot of happy memories from when I was a child. I also visualise people’s faces.

 

The reasons why I hate my ‘rainbow brain.’

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  • Because it allows me to ‘overthink’ I’d love to have the ability to ‘under-think’ (if that’s even a word!?!) I can have a conversation one day and still be worrying that I didn’t say something right 2 weeks later!
  • Because I find some people beyond confusing, I tend to respond well to people who are straightforward and tell me exactly how it is, people who are ‘woolly’ and don’t tell me things straight are confusing! People, including family members, have taken me off their Facebook friends list, I’d like to know why, if you don’t like me or I’ve done something to upset/annoy sometime I just wish they’d tell me straight, rather than just ignoring me and remaining ‘secretive,’ I like to know where I stand! If I know I can then deal with it and move on! Rather than just obsessing over it for weeks! Cue ‘obsessive personality!’
  • Because I have an obsessive nature and that I find it very difficult to ‘let things go,’ often obsessing for days, weeks, months, even years! If I feel ‘wronged’ about something I will go on and on about it! And this usually ends in me writing a long letter or email about how wronged I feel!
  • Because I HATE to be wrong! If I get ‘told off,’ or if someone doesn’t see things from my viewpoint I tend to argue my point and then shut down to avoid any sort of confrontation and then I get what I call ‘red mist,’ where I just feel angry and find it very difficult to calm down!
  • Because I don’t forget! Sometimes I wish I could wipe certain memories as they often come back in a ‘flash-back.’ I can remember the look on the faces of people who teased or bullied me when I was a child, I often focus on a negative feature that they had and wondered why they were teasing or bullying me when no one is perfect! Like the boy with the big, googly eyes, so big and starey that they could take over his whole head, the girl who told me I was ‘fat’ and needed a bra when I was 11, yet a tin of ‘Slim Fast’ fell out of her bag, and the boy who everyone seemed to love, yet had these big flarey nostrils that could almost breathe fire! I wonder if these people grew up to be the same, making themselves feel better through making someone else so unhappy? 
  • Because I find it hard to start a task and then find it impossible to stop doing it! Sometimes I will put something off and procrastinate but when I eventually get around to doing it, then find it difficult to leave the task unfinished! I often am up past 12am as I am a night thinker, however not so great when your children get up at 5am!
  • Because my brain can make me so paranoid, my brain has needed Cognitive Behaviour Therapy (currently on a waiting list for more,) counselling and life coaching. Sometimes life is hard and tasks and events that ‘Neurotypical’ people may find not so catastrophic, I find incredibly difficult. This is why I do look back and sometimes wonder how I’ve just been ‘allowed’ to go on and make many mistakes as I’m such a poor judgement maker and often feel judged for making the wrong decision, yet nobody actually guides me and steers me the ‘right’ way. 

However difficult things can be sometimes, I cannot change my rainbow brain, I just have to embrace it and use it to its best abilities and just try and learn coping mechanisms for those negative aspects. 

Why can’t I just feel settled?

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So the best way for me to get my frustrations and anger out as usual is to write it all in a blog post! I’m sure I’ve been very annoying lately on my personal Facebook profile as I’m continually ranting about our current housing situation! This is because I feel so wronged and I’m trying to ensure that I do the very best for my children.
Some of what I describe in this post also relates to my current assignment for my course: ‘Understanding Autism,’ as I’m learning all about the legislation that protects people who are on the Autistic Spectrum.
I want to share this experience in the hope that other people do not have to go through the same.
One of the most surprising things about me is that I just can’t settle in terms of finding appropriate housing, considering that I’m going through an assessment for Autistic Spectrum Condition and I don’t usually cope very well with too many changes, I have moved house now 17 times since the age of 18! (This does include 3 different places whilst I was at University.) I am absolutely rubbish at making decisions, I never quite know what to do for the best, and it’s even harder now I have my 2 children to think about as their safety and happiness are paramount. My own mum describes my situation as the ‘fight’ or ‘flight’ method when things start getting tricky for me to cope with.
In the most recent of house moves, I’ve moved into the nearest city to be closer to where I worked but then the house got sold so we have to find somewhere alternative, we then moved into a new build flat in a local town but this was a first floor flat with no garden so Lou really struggled to burn energy and I was struggling so much with getting 2 children and a pushchair down a flight of stairs. We then found what we thought was the perfect house in a village location, complete with village school, park and green space 5 mins walk and my parents 5 mins away via car and walking distance to the nearest town, (well it takes me 40 mins, and I’m used to this as I walk everywhere!)
We had no problems really at all for the first year of living here, until around 6 months ago the neighbouring house (that’s attached to our house) became overcrowded. A house full of adults and confrontational ones at that! People lost jobs, being in a confined space and presumably bored, they argue and swear at each other constantly. They swear, every other word, loudly in the garden, Lou is currently being assessed for Autism, if she hears new or different words or phrases, she will copy and repeat over and over. I guess I am old fashioned in my views, but I simply cannot have her going into school and repeating phrases that I didn’t hear until I started high school! They also fight, and shout in the street, a month ago a fight broke out and someone banged my door very loudly, frightened that someone would get hurt I did call the police but they seemed to be talked down as seems the case a lot of the time, sadly. As I have described before in many previous posts, my eldest daughter Lou, displays a great deal of PDA traits (Pathological Demand Avoidance) and also ADHD, her high anxiety causes her to become very frustrated and often volatile. By hearing confrontations only meters away and through our walls, this is saying to her ‘it’s ok’ to be like this, whilst myself and Lou’s daddy are doing everything in our power to keep her calm and practice relaxation techniques.
There is 0 respect and 0 consideration, these people are disrespectful to all of the families in our row of houses, they stand in their garden after 10pm at night and have very loud conversations right under the window where my 2 girls sleep, often waking them up. When you have 2 children that find it difficult to fall and stay asleep this is beyond frustrating! But my voice is a lone one, no one else seems to back me up, bar one other resident, possibly in fear of repercussions. Since we started experiencing issues with these people we’ve had 2 visitors to our house – my parents – this tells me that we are being isolated even further than we already feel, and this causes me so much stress at the moment, especially as I feel that my children can’t invite any friends to our house. Oh and I forgot to also mention the Cannabis fumes that float into our home on a daily basis so much that we cannot have our patio doors or the girls’ bedroom window open as the rooms would fill with the fumes.
Oh and one of the most difficult things for me to get my head around is that the lead tenant of the household works in a local school in an Autism base! Surely this person should realise the effects of Anti social behaviour on people on the Autistic Spectrum? You would think? I certainly would want my child going to this school! At the very least I would have thought that this person should be aware that both of my children are very wary of loud noises.
So the housing agency we rent from asked me to keep an ‘Anti-Social Behaviour’ diary, which I have done since March 2017, like I haven’t already got enough on my plate! And just in case I may be making it all up! Then cue a visit from our local housing warden, which I have to admit was the most awkward interaction that I’ve had for a very long time!
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The ‘warden’ (as I’ll refer to this person as for the purposes of this post,) proceeded to tell me that my complaint was “far too long” that I’d written about what we’ve been encountering as a family. The Warden sarcastically (I think) said that:
“By the time I’d printed off your complaint everyone else in the office had gone home.” On another day I may have found this funny, but not today when we were talking about a serious situation. So for the rest of this part of my post I will bullet point how helpful the ‘warden’ was.
(I did try and explain that I’m a blogger and writing is what I ‘do’ and that people on the ASD spectrum will often include all the details they know in fear of missing something out, that could be a vital piece of information.)
  • 60% of the conversation we had over the span of an hour was filled with jokes, everyone needs a laugh now and again, but again, for a serious matter I found it difficult to understand the warden’s jokes, and by the time my mum had explained them to me, they were far from funny! My mum (sitting in on the conversation, and glad I preempted this,) attempted to explain that “my daughter doesn’t always understand jokes.) But no – unfortunately no understanding there.
  • “I’ve had much worse” and “other people have it much worse than this.” The Warden, in an attempt to make me feel better about the situation unknowingly made it worse! By proceeding to tell me that “only last week someone tried to kill me.” And that “in other areas they have it much worse than this.” Leaving me with the feeling that I don’t really wish to stick around to allow it to get this bad! For me it is difficult to see the outer world when I’m under great stress in my little world – within my family and surroundings, it may be the case that situations are much worse in inner city areas, but we are based in a small village and I didn’t feel that my situation and feelings were taken seriously, I didn’t need to have the worry placed into my head about how worse it can get.
  • The warden referred to ‘my anxiety’ and ‘seeing things differently,’ which, yes I do, but I felt belittled in the situation that I feel very unhappy about, I don’t think any family with young children should have to put up with such anti-social behaviours, regardless of whether they have anxiety or not.
  • The warden said directly to me: “What have they done?” I referred to the 2 sides of A4, (the ASB diary,) that I’d been asked to keep, so I replied: “Here, it’s all written down.” To which the warden replied: “No, what have they done to you?” My mum had to explain that the warden meant physically, what have they done, but physically I haven’t been attacked, why should it even have to reach this point? I cannot even stand to have other people, (other than close family members,) touch me, let alone stay around long enough to let anyone physically attack me, the warden said that the only way an ASB complaint would be taken seriously was if I was physically attacked! How could the warden even put this in my head that this could happen? Making me even more fearful. So banging loudly on my door and running away and having confrontations in the street shouldn’t be taken seriously? What about intimidation? What about the mental affects? It doesn’t always need to be physical.

Now I refer to the legislation that I’m currently learning about in my ‘Understanding Autism’ course, I am very grateful I had my mum present during this meeting to act as an advocate, to aid my understanding and decipher the ‘hidden meanings’ and sarcasm that this conversation was sadly full of. After this interaction I have since learnt that:

The Autism Act 2009: “informs local authorities, what actions should be taken to meet the needs of individuals with autism living in their area.” It states that local authorities:

“should provide autism awareness training for all staff.” 

(Source: NCFE Certificate in Understanding Autism Workbook 1.)

If the warden had this awareness training then they would have known:

  • Not to fill 60% of time out of the hour with jokes.
  • Not to criticize the length of complaint given.
  • Not to state what is happening in the cases of people outside the immediate environment.
  • Not to use anxiety as an excuse for experiencing problems with the housing situation.
  • To listen and be respectful and be careful not to put extra stress onto the person via ‘hidden meanings’ in the conversation, to use clear and concise questioning.
  • Not to use sarcasm in the conversation, as it can make the person feel belittled and will shut down.
  • That people with ASD are often affected by loud noises, such as people shouting and confrontations.

 

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People with mental health difficulties, and disabilities, such as ASD/ASC experience this sort of lack of awareness and understanding everyday. I want to do my best to combat this so that other people don’t have to experience the same as what I have.

And I still don’t know what is happening with the housing situation, we have a view to move, even though we are not the ones causing all of the issues, but I will do everything in my power to keep my children safe, there is also the issue that Lou is finding sharing a bedroom with her younger sister difficult and should really have her own specified space to allow her to calm in her own environment and Moo should have her own room as her ‘safe zone,’ where she can retreat to if Lou is having a ‘sensory overload.’ The uncertainty is unnerving, but watch this space.

That magic ‘driving key’

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I grew up believing that to receive your driving licence is literally like being given a ‘magic key,’ to a different world!

I was under the impression that it was essential for everyone to hold this ‘magic key.’ At times when things get a bit tricky at home, usually after one of Lou’s violent outbursts, I get the big feeling once again of guilt, that my children aren’t getting the same experiences to other children, who’s parent’s hold that all important magic key! In reality even though kind people, who are attempting to make me feel better, have mentioned to “just get her out” in terms of avoiding the behaviours that Lou displays at home. Other people have been astonished when I mentioned that both myself and Lou’s father do not drive, “Really, so you both don’t drive?” This is becoming one of those posts where I feel that I have to ‘justify’ myself, but I’ve had to explain this so many times, and until recently I didn’t even know the true meaning as to why I find driving so difficult. or openly wish to admit it to people, as this feels like yet another failure on my part.

The bottom line is, even if I did hold this ‘magic key,’ I really don’t think I could still take both of my kids out unaccompanied! In public places, Lou experiences ‘sensory overloads,’ this means that she may likely throw herself down onto the floor (anywhere) and I have to calm her whilst also keeping an eye on a toddler who also experiences sensory difficulties in terms of noise in busy places, such as supermarkets. Then whilst all of this is going on, and there a lot of noise, people staring and tutting I then start getting very anxious and the lights are bright and then before we know it I’m having an overload and want to immediately run for the door and get out! There’s also the issue of getting to and from places, with Lou who likes to kick into the back of the car seats and poke and pinch her younger sister, I have visions of having to stop frequently along any journey to prevent her from an outburst, which would mean that safety would be compromised, not to mention that to properly concentrate I cannot cope with any noise in the car! More of this to come in a minute!!!!

I always have told people that my reason for not trying to obtain the ‘magic key,’ was due to an accident that I had with an arctic lorry when I was in a learner car when I was 17, yes this is 100% true and I am very anxious with being on the road, especially when I see lorries, however I have recently had another ‘light bulb’ moment in terms of why I find it so difficult being ‘in charge’ of a car.

  1. I’m not great with demands! (I wonder where Lou gets this from?!?) Driving is one huge demand with lots of underlying demands, with an instructor sat next to me and ‘telling me what to do,’ I often felt like saying to them: “Just shut up!” (Whoops.) This causes my brain to go blank, just like when someone gives me a maths problem to solve, my brain goes into ‘fight’ or ‘flight’ mode and will shut down and go completely blank. (Dangerous behind the wheel.)
  2. I have been experiencing a great deal of ‘visual stress,’ over the past few months, resulting in pain around my eyes and headaches, I think I do need stronger glasses and I’m attending to this, this week. However I recently found out about ‘Irlen Syndrome,’ and it was like another ‘light-bulb’ moment! I’ve been experiencing many of the symptoms of ‘Irlens’ since I was a child and have just presumed that everyone sees like this! (Whoops,) when I was 11 I complained about not being able to see the information on the new class ‘Whiteboard’ and that I could see better on the good old-fashioned ‘blackboard,’ so what they did was to move me closer to the board, which if anything, made it worse! It was, in fact, the brightness and glare of the whiteboard that I was struggling with. Looking back on every photograph taken of me outside, I am squinting and finding it very hard to see and keep my eyes open, my eyes hurt when I’m trying to concentrate in full sunlight, sometimes I find it more comfortable to even wear my sunglasses inside the house! I also turn off the lights and sit in the dark and pull curtains across to avoid the sunlight! I turn my laptop screen to dull white and my phone now has a light green, instead of the white background. If I’m in bright sunlight, especially when on a driving lesson, I will be affected more by the brightness that it would create coloured shapes that move across my vision and leave an outline of objects even after they have gone out of sight. It is difficult to judge spaces and judgment becomes generally out-of-sync. It is therefore most likely why I’ve previously described being in control of a car as ‘like someone else is controlling it, and that I go into a trance-like state.’

You can read more about ‘Irlen Syndrome’ here:

http://irlenuk.com/irlen-symptoms-overview.htm

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3. I cannot afford lessons, a car, MOT, Tax, petrol, etc!!!! Money is extremely tight, more than ever as we are ‘one-parent who works,’ household currently, whilst I am available for my 2 young children when they need me most. Any spare scrap of money goes onto essential items for the girls, such as clothing and specialist items, such as sensory toys and equipment to support their sensory seeking behaviours. It would take a lot of money to get that ‘special key,’ and I may also yet require special lenses for my glasses depending on the outcomes of assessments I’m looking at in the near future.

4. I just don’t understand!!! On the surface I may appear to understand, usually giving a polite nod, when underneath the surface it’s like I’m frantically trying to tread water! I am an visual and kinesthetic learner, I learn by seeing and doing, via trial and error, unfortunately with driving you cannot always use the trial and error method! What I should have been completely honest about when people ask me why I don’t drive is that I’m actually being assessed for an ‘Autistic Spectrum Condition,’ (ASC,) which until recently (and a change of term,) I would have been most likely described as having ‘Asperger’s Syndrome,’ and as I have written in my latest essay: “People with Asperger’s Syndrome, can speak in sentences, however their understanding of what is being said and understanding the context can be limited.” I’m pretty sure that most of my early language was either repeating phrases I’d heard (known as echolalia) and talking about my ‘special interests,’ and as I’ve come into adulthood, pieced it together a bit in the middle! In my own words, on the surface I can appear to ‘talk-the-talk,’ but actually fully understanding what I’m saying in a different ball game! So when my old driving instructor used to tell me that when doing a ‘3-point-turn,’ that I needed to look at the angle of a particular object in the mirror, I had no clue what he was actually on about!

4. Lou’s Daddy can practically drive, he has awareness of the road as he’s been riding a moped for a number of years, however, to gain his ‘magic key,’ he would have to pass his all important Theory Test, and this, at the moment would be like mission impossible as we are looking at getting him officially tested for Dyslexia. We recently accessed his medical records (which is a whole different story!) But even though we believed that he has Dyslexia, there is no ‘official’ diagnosis anywhere in his medical history (those good one 1980s again!) He has taken the theory test with the aid of headphones and someone reading the questions to him, but he’s still struggled. So between us we are a right pair!

 

Every time someone offers me a lift, I feel guilty and like I have to justify why I don’t drive, every medical appointment I have to explain how I have to get there via public transport and I cringe every time one of my girls gets an appointment and it’s not near a bus or train route! However, I do need to stop the guilt trip and remember that not absolutely everyone needs to untimely have that ‘magic key,’ as there may be varying circumstances, and I need to remember that what I can offer my children, is my time and a whole 13 years worth of activity ideas.

Thanks for reading 🙂

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Spectrum Sunday

Piece I wrote for my High School Alumni page

I recently wrote a piece for my old high school’s Alumni page on the schools website. This detailed the journey I have made since I left high school:

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Attending the ‘Autism Show’ at Birmingham NEC, June 2017. 

Pershore High School Alumi

Nicola Perrins.

I took my GCSE’s at Pershore High School in 1999. I then went on to study for a GNVQ in Health and Social Care at Pershore Sixth Form, and then onto the University of Worcester to study Primary Education with a specialism in Early Years, where I graduated in 2004, and later returned in 2010 to complete my Early Years Teacher Status (EYTS) qualification.

I have worked in the Early Years education sector for the past 13 years, including schools, nurseries, after school and holiday club provision. My first job role was working in a large Infant school in Norwich, Norfolk and my last role was based at RGS Springfield (Worcester,) at their onsite Nursery.

Since having my 2 children in 2012 and 2015 my career path has taken a slightly different route, with my love of childcare and education still at the heart. I have always been passionate about writing and In March 2016 I started a blog supporting parents who have children with additional needs. I have written posts for local newspapers and write a monthly post for a charity that supports families who have a child(ren) with disabilities. I like to use my own photography for my blog posts. I also have social media accounts that accompany the blog.

In September 2017 I became a self-employed to carry out music, movement and sensory sessions with Early Years children in the local area. My plans for the next year, before my youngest child starts school, is to take up a volunteering role at the local children’s centre, whilst completing online distance learning courses in Understanding Autism, Understanding Mental Health and Counselling. I hope to gain more experience in working with children and families.

In the future I hope to compile my own book to support parents who have children with additional needs and I also have an idea for a children’s book. I also hope to attend my first blogging conference.

300 word piece I wrote for Worcester News – ‘Mum’s World.’

I recently wrote a piece for my local newspaper on parenting children with additional needs. The passage I wrote was for a coloumn called ‘Mum’s World,’ which is lead by Siani Driver who formed the 5,550+ strong ‘Worcestershire Mum’s Network,’ group on Facebook.

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Parenting children with additional needs.
 
When I found out in April 2016 that my eldest daughter, (then aged 4,) had additional needs, I admit I was struggling, I was at a loss and felt completely hopeless. I also felt very alone. You worry about your child’s future, you worry about if you did anything to contribute in the past, you may even sometimes hear comments such as “it must be your parenting skills.” 
You can hear tuts and people stare if your child is having a ‘meltdown,’ in public.
You fight for your child to be heard and for their needs to be supported, especially if your child presents differently at school to what they do at home, where they feel most comfortable and with the people they feel most comfortable with.
 
In March 2017 I decided to start a ‘Blog’ to share my thoughts and share experiences with parents who may be going through the same thing.
 
Linking up with other parents who just ‘got it’ and joining online support groups has been my salvation, I’ve been to coffee mornings for parents to chat and also ‘meet-ups’ where the children are invited along for picnics, adventure parks and boat trips. 
 
From September 2017 I’m going to be volunteering at my local children’s centre and helping to run a local support group for the parents of children who have additional needs. 
 
When I recently noticed some ‘sensory seeking’ behaviours in my youngest child, (now 2,) I shared my concerns with our health visitor and she’s now been referred to relevant professionals, I now understand that it is best to share concerns, the earlier the better, to ensure that the appropriate support is given. 
 
I am always happy to answer any questions from other parents via my Facebook page: 
Or via my blog email: 
sensorysensitivemummy@outlook.com
 

I like to think of myself as a ‘warrior mum’ not a ‘pushy parent’ 


3 years so far, 3 years that I’ve been in a constant battle for understanding and awareness of my child’s additional needs. And I talk to many parents on a daily basis that have been fighting for a lot longer than this. 
After I saw on Twitter that there had been a lot of debate on a certain article published by the TES and Guardian, I thought I’d best give it a read. 

Straightaway whilst reading through it sparked many thoughts and comments about the journey we’re having with our eldest child, and also my own experiences of the education system. 

The first article I read was titled: 

“Its unforgivable that so many children are misdiagnosed with learning difficulties, diverting help from those with genuine need.” 

From TES 24/02/17

www.tes.com

What makes me so compelled to explain myself is that I often stop and think that I may be perceived as a ‘pushy parent,’ instead of a parent who only wants the best for their child, it has stopped me from speaking out in the past and even though I’m now seeing traits of SPD in my youngest child, due to the negative perceptions and receptions I’ve received in the past 3 years, I’m now too afraid to mention anything, I’d rather wait until a professional approaches me ‘if’ they notice something in her. This is wrong, I shouldn’t have to feel like this, with my eldest I just couldn’t stand by and watch her suffer after being told repeatedly since she was 18-months old that “she’ll grow out of it.” Or her sensory seeking behaviours we’re “normal for her age.” 

The one huge factor in having to be in constant ‘battle mode’ is that my child is a huge ‘masker’ of her difficulties at school, and schools seem to be the place where all the assessments go on, they never ask to come in to observe her at home where she feels most comfortable in a environment with both myself and her father, her main care givers, who she knows will love her unconditionally. So what did I do? I sent an 11-page document explaining and detailing how our daughter presents at home to the ASD assessment team as she is currently at the start of an ASD assessment, I do wonder if they see me as a ‘pushy parent’ but I’m a huge believer in always looking at the bigger picture and ‘just because you can’t see it, doesn’t mean it’s not there!’ 

I’ve had so many battles with being believed with our daughter as she displays ASD traits but can give eye contact to the people she is most familiar with, and she can engage in imaginative play and this baffles professionals, (I’m exactly the same,) I will always stand by that the ASD spectrum is so wide that not every child ‘doesn’t give eye contact,’ etc they need to look so carefully at each child as an individual. I’ve researched PDA (Pathological Demand Avoidance) as our daughter scores highly on the PDA scales on the PDA Society website, but actually getting professionals to accept this is a huge battle in itself, even though I’ve clearly identified these traits in my child. 

One statement that really did hit a raw nerve with me was: 

“Almost three-quarters of teachers (72 per cent) believed some parents wanted their child to be labelled as SEND, even though there was little objective evidence to support that belief” 

TES 24/02/17

I would never just ‘want’ my child to be labelled as SEND, I advocate for her for one HUGE reason, and that is to prevent her from going through the same difficulties as myself through the whole school education system, because no one looked at the bigger picture and I was just left to ‘get on with it’ and my mental health suffered so much as a result. 

I was labelled as ‘Painfully Shy’ at both middle school and high school, did they not notice that I was not giving eye contact? That I never spoke up in class? That I was a loner on the whole but hid behind ‘friends’ that I thought were protecting me? That after these ‘friends’ had legged it out at lunchtime (and I didn’t like breaking the rules,) that I hid away in the school library for safety? Did they never notice that I was chewing the skin off my palms and all my fingers and biting holes in my jumpers because I was that traumatised by the sounds and sheer amount of people around me? Did they never know that I was being bullied and teased every single day? Did anyone ever take the time to actually talk to me about what I enjoyed doing and then they would have realised that I had ‘special interests’ and I could tell them anything and everything about these special interests? 

No, nothing, zilch 😦 

Because I was never given the help and support I so desperately craved my difficulties have been given many labels ‘anxiety’ ‘depression’ even ‘Bi Polar’ in 2008, but I’ve always believe that there was something more, but too afraid to tell anyone in fear of being labelled as ‘strange’ or ‘weird.’ 

I’ve been involved in conversations where professionals are confused as to why I can explain exactly how my child is feeling, especially in terms of sensory overloads, for example, I know that she’d be distracted by a label in her uniform as I used to feel the same, labels could effect my whole day at school, like a razor blade is cutting into my skin around my neck. 

I do wonder which teachers were surveyed for ‘YouGov’ on behalf of GL Assessment, (The leading provider of formative assessments to U.K. schools,) as an Early Years teacher of 13 years, even before having my children I would never have ‘blamed’ parental pressure, I just saw them as passionate parents wanting the best for their children. 

I have, sadly, heard many comments such as “you didn’t get all these Special Needs in my day,” and “they are just naughty” but I will always argue that today, in the present we are very lucky to have such a wealth of knowledge via the use of the Internet and more reasearch is thankfully done to understand SEND better than, say even in the 1980’s when I was born. 

If I ever have time mid-meltdown, (or sensory overload,) I would conclude to myself that I could never make any of this up, whilst I’m attempting to calm my child down, by safely restraining her, even though I’ve never had any safe restraining training, though I’ve asked for this time after time. 

In fact, after 3 attempts at applying for DLA I’m now too afraid to apply again, and we save every penny to provide our child with sensory equipment to support her ‘sensory seeking needs’ and equipment like a ‘weighted blanket’ to calm her. In fear of being accused of making it all up to gain benefits. I don’t want money, I don’t want preferential treatment in exams once she reaches this age, as the TES report suggests that: 

Teachers claim that some parents are pushing for a special needs diagnosis so that their children will be given preferential treatment in exams.” 

TES 24/02/17 

www.tes.com

My priority is that my child is happy which is paramount, I spent so much time revising for my GCSE’s in fear of not passing, that I shut myself away from the world and was verging on a breakdown just in fear of failure. I HAD to pass those exams and I missed out on so much in this time, I wanted to match up to the other students around me to appear ‘normal’ and I do not want this for my child. 

I’ve wanted to give up this fight so many times, being knocked back and sent away, but I can’t just leave it, I’ve had to grow a massive backbone which is a huge thing for someone who finds it difficult to oppose anyone else’s viewpoint and has avoided any difference in opinion or confrontation for most of my life. 

I’m now not ashamed to advocate for my child, before we started our journey I would let people walk all over me and just agree with what professionals say, and thought they are experienced, they must be right it must be my parenting…

Umm… no… 

… I am a fighter, warrior mum and I do this because I want understanding and support for my child, for now, for teenager years, and to enable her to reach adulthood without being afraid to be herself and for others to understand her and to accept her for the fantastic, individual and unique person she is 🙂 
Thanks for reading 🙂 

Hooked on Labels - responses & other relevant posts linky

Snippets of Christmas ~ A mini series.

Experiences of Christmas in a household with a child who has Sensory Processing disorder, along with traits of ASD and ADHD. 

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I love Christmas, although it’s a busy time, it has to be my favourite time of year – a special time for family. I come a fairly traditional family, and we have always celebrated festivals such as Christmas in a certain way. Now my eldest child, Lou is almost 5, she is more aware of the celebrations, via home and school experiences. I decided to write a mini series to show what we experience when celebrating Christmas with a child who experiences sensory sensitives and sensory overloads.

Advent calendars! 

I had bought Lou’s ‘Shopkins’ advent calendar a while ago as it was a ‘but it when you see it’ experience! Shopkins are her current ‘special interest’ and she was aware that the calendar was being stored in the kitchen cupboard, as I purchased it at the beginning of November, she asked to ‘look’ at the calendar every day! On the morning of 1st December her calendar was presented to her via her ‘House Elf’ we have named ‘Fred,’ She said:

“Today is number 1,” (then eats the chocolate,) Then: “Now it’s number 2, then 3, then 4!”

We had to then explain that it is only 1 chocolate per day, and this was hard to take in, therefore the calendar had to be stored out of sight!

‘Fred’ the ‘Elf on the shelf’ returns! 

Lou has been coming downstairs for around a week now and saying: “No presents today!” She hasn’t quite grasped the concept of time and when Christmas day actually is. At bedtime we discussed whether Fred would be returning from the North Pole and she announced: “I don’t like that Elf!” Then I was left thinking oh dear, should I really be doing this at all!?! However, on the morning of the 1st December she was delighted that her Elf had returned and she held him until she went to school, even keeping him under her arm as she ate breakfast! When not really wanting to get dressed for school, she shouted at her dad:

“This elf is telling Santa that Daddy is a naughty boy!”

Next in my series… The Nativity!

Thanks for reading 🙂

 

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Channillo: A Digital Publishing Platform for Writers

Channillo is the platform from where I’m publishing my 2 Online series 🙂

Roughly this time last year, Kara Klotz launched Channillo, a subscription-based digital publishing platform for authors. The concept is fairly simple: authors apply to publish their content in serial format on the site, and readers pay a monthly fee that allows them to follow and read several stories at a time. The authors take home a collective 80% of the site’s revenue, based on the number of subscribers to their work, and they have a new channel to engage with readers and build their platform.

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