Happy New Year! 

Just a quick one! 

Thank you to all my followers and likers in 2016 🙂 

I have been so happy with how my Blog, Facebook, Twitter and Instagram have all taken off since March 2016. 

I wanted to share our journey so far, to help others where I can, and so far I’ve been able to do this and connect with other parents who are going through exactly the same 🙂 

I hope for 2017 to write more posts, to have confidence to fight for what I believe in and support for our daughter 🙂 

I hope to also gain answers in terms of my own journey 🙂 

I would like to continue to grow my business ‘Sensory Mummy Music‘ and start a children book idea that I’ve had for a while now ! 

Thank you to everyone who has liked, commented and supported us in 2016 🙂 

That ‘light-bulb’ moment…

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I first heard the word ‘Autism’ whilst I was studying for my 3-year teaching degree. Autism was referred to during my lectures on SEN and the SEN Code of Practice 2001 (as it was then known as back in 2001.)

I then completed a few courses run by the county council such as ‘Autism in the Early Years.’ I worked in a school in Norwich where there were a few pupils with ASD, just referred to as ‘Autism’ back in 2004. I must admit my initial thoughts about Autism were limited to people who find eye-contact difficult and those that seem to be ‘in their own world.’ How wrong I was, I had no idea that the ‘Spectrum’ was so wide and varied, util i started researching Sensory Processing Disorder (SPD) and Autistic Spectrum Disorders (ASD) in terms of gaining information about my own child and starting my blog in March 2016.

Some questions were raised myself, after watching a documentary on ‘Girls with Autism’ http://www.itv.com/presscentre/press-releases/girls-autism a documentary shown on ITV in July 2015, based at Limpsfield Grange in Surrey. Which is the only state run boarding school in Britain specialising in girls with Autism. During this documentary it was highlighted that in some teenage girls, diagnoses such as Anorexia, Depression and particularly Bi Polar, have been given and not Autism. This hit home for me, remembering the time that my mum took me to my GP and said “please help, my daughter won’t eat,” after I only ate minimal food such as cucumber and gagged on the majority of my food, at the age of 14. I have often been told that I am anxious and/or depressed, In 2009 a doctor in Norwich labelled me as ‘Bi Polar,’ but I’ve always had serious doubts that this is the case.

It wasn’t until I attended a talk led by ‘Autism West Midlands’ in September 2016, that I had a ‘light-bulb’ moment. As we discussed various traits and issues experienced by other parents I sat there thinking, that sounds just like me! When discussing that some children simply cannot tell when they are full and have no idea when they are full, I thought “that’s me.” This also applied when talking about masking at school and building up sensory overloads all day at school, and then finally releasing like a volcano erupting once reaching home. I was a huge conformist as a child and a teenager, I can remember only ever having 2 detentions in my whole school life! I am, and was scared of authority, I used to get upset if other children were shouted at in class.

After the Autism talk I decided to look into the pro’s and con’s of going to ask my GP about the possibility of an adult assessment for ASD, in particular Asperger’s Syndrome, but I’m currently unsure if this can still be referred to?

I realised that I had taught myself how to deal with a lot of my traits as I’d grown into adulthood and that I am functioning fairly ‘OK’ these days, so I wasn’t looking for any sort of support in terms of strategies, although I’m always open to suggestions! Some of the things I have taught myself over time are:

  • Understanding jokes and sense of humour – although I still don’t always get some jokes!
  • How to gain and keep eye contact – this didn’t happen until I was around 18 and got my first job in customer service.
  • How to understand non-verbal cues in conversations, e.g. winks, yawns (if someone is bored!) etc.
  • How to hold a conversation that isn’t entirely one-sided! Sometimes I literally have verbal diarrhea – If I’m talking about something that I enjoy, or that I’m passionate about I forget to allow the person I’m talking to to respond or have their own say, so I’m now more aware of how conversations should go!
  • To know that not everyone has to be ‘my friend.’ I spent a great number of years trying to please everyone, I have been known to change my point of view to one that I know that the other person would agree with, if only to diffuse a situation and to avoid a disagreement or argument as I really am uncomfortable with any sort of confrontation. As a result I have often been ‘walked all over’ and have been a easy target to manipulate. It is only in the past year that I have said to myself ‘enough is enough’ and have stood up several times for what I truly believe in. I think becoming a mother has played a huge part in this!
  • Relationships ! This has always been a sore subject! Well until now! I’ve always struggled to find people that actually ‘get me.’ I was often called weird and it was difficult for past partners to live with my ‘quirks!’ I think this explains why I have struggled to commit long term in the past and also struggled to trust. Once I found someone who understands me it was very different, very difficult to live with at times, but I am not as impulsive as I was in my 20’s!
  • Saying things I don’t mean and speaking without thinking first, I don’t have a filter for the majority of time! If a though pops into my head it literally comes straight out! This results in me often wallowing for hours after a conversation wondering about why I said what I did and if the other person in the conversation was offended by what I said! Saying the wrong thing and people looking at me when I talk are the reasons that I didn’t talk very much as a child at school, I was labelled throughout my school life as ‘painfully shy.’ In fact, I knew most of the answers to questions in class I was just desperate not to be noticed or attention drawn to me, I like to fade into the background and would have loved an ‘Invisibility Cloak!’

Knowing that I am functioning in terms of running a household and caring for 2 young children, I had to think about the possible advantages of an adult ASD assessment:

  • I would hopefully be given answers to questions that I’ve had about myself my whole life, to confirm or dismiss any previous diagnoses.
  • Not a great deal would change, I would still have my home, my 2 children and partner of 6 years. I have also been able to hold down a job since I was 16 and I’ve worked in Childcare and Education for 13 years with only having around 6 week’s off work sick. I would also hope that my friends would understand me and that I haven’t changed, friends are precious to me as I find it so difficult to make and keep them!
  • I would hope that it may support future job roles, as I do hope to eventually work with children with additional needs, especially those with ASD, and Sensory Processing Difficulties as I can put myself in their place, I kind of know how they may be feeling, and If they are getting upset about something, it can be something as simple as a label in their clothes that has been making them feel uncomfortable all day.

I also had my doubts:

  • Would people treat me any differently? Think of me as only trying to gain money from a diagnosis, when it’s the same for my daughter, we don’t qualify and it is not the reason behind it – the reason is helping to accept myself and move on.
  • Would it affect my career? I’m worried that some may think that a diagnosis would effect my ability to do my job, but as stated above I have been doing it for 13 years, my paperwork is meticulous and I could never do any other job as it’s all I’ve ever known!

As I have dispelled my own doubts, I went to my GP after scoring myself with an online Asperger’s test where I scored 48 out of 50. I sent this test prior to my GP appointment and from there I was referred straight on for an adult ASD assessment. This was in October 2016 and I’m fully aware that this is going to be a long process and I’m prepared for the wait. I have spent many appointments with my daughter where I have explained in great detail how she feels, and have been often questioned:

“How do you know how she feels?” 

My reply has always been:

“Because I feel the same.” 

This is especially prominent in terms of sensory sensitivities such as itchy jumpers and labels in clothes!

What I hope to say in future appointment is:

“Because I am an adult who has ASD.” 

I have taken a while to write this post, I felt ashamed at first, I wrote a poem and had it shared anonymously, very kindly by Kelly at ‘Its a Tink Thing.‘ Here is the poem I wrote;

http://itsatinkthing.com/special-needs/a-cry-for-help/

Only this Monday I read the following article, published by the Guardian:

www.theguardian.com/autism-hidden-pool-of-undiagnosed-mothers

The following quote hit home for me:

“Their own autism, often undiagnosed, means they put professionals’ backs up and can be accused of causing or fabricating their children’s condition,” said Gould.

Source: theguardian.com 26/12/16.

I’m literally had no idea about my traits until I started looking into Sensory Processing Disorder, and I was invited to the talk on Autism by our previous Family Support Worker, this article states that there are other people who have the same experiences. I am currently in limbo as to whether I continue the fight for Lou or give up as I often left to feel like I am ‘making it all up,’ ‘fabricating’ or ‘exaggerating.’ My parenting has been blamed many a time for the behaviours that our daughter displays at home, I’m often left to ask people around me if they believe me, my poor mother has been asked this so may times, but as I have dedicated 12 months to building my Blog, Facebook and Twitter to my daughter’s story how could I simply be making this up?

For now, I’m taking each day at a time and seeing where it takes us.

One thing is for sure, I’ve learnt that I am who I am and I cannot change who i am and that I should be accepting of myself and proud of what I have and what I have achieved in my 34 years on this planet! 

I would be completely lost without online support groups, there are support groups for people who are experiencing the same and it helps so much to talk to people that completely ‘get’ what I am saying. I have to also thank Autism West Midlands and The National Autistic Society for their wonderful websites, which have given me so much support and information.

 

If anyone is interested below is a link to my notes that I hope to take to my initial ASD assessment appointment. I welcome any feedback in terms of other adults who already have an ASD diagnosis to see what they think about my traits.

notes-for-assessment-for-blog

 

Thanks for reading, and hopefully understanding! 🙂

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Hooked on Labels - responses & other relevant posts linky

My Year ~ 2016

The amount that has happened in 2016 is incredible, I feel empowered to write this post as we have only a few weeks left of this year. I have also decided to give myself some time off over the Christmas season so now feels like the time to round everything up! 

There have been many ups and many downs to this year ~ the most significant thing that I feel I did this year was to start this Blog in March 2016. It has literally changed my life and opened up so many opportunities for me. It almost has it’s own persona now, I feel like my Blog holds such a significance to who I now am. I’ve never been very good at expressing my true feelings or saying how I really feel about something, now my Blog is a huge tool for how I express myself, it is a form of therapy for me to get all of the thoughts and feelings onto something that is out of my head! 

In addition to writing Blog posts, I also keep on top of Facebook pages, Twitter and Instagram accounts for ‘Sensory Sensitive Mummy.’ 



I’m forever saying this, but parenting is the biggest challenge of my life to date, especially to a child who has additional needs, my Blog has been a platform for me to research and share our story in such a way that other people have responded, this has resulted in me knowing that we are not alone in this, it is incredible how many other parents there are out there who are experiencing exactly the same as we are, this has given me much comfort.

Things that have also happened this year: 

  • I became self-employed! I used knowledge that I’ve have gained from working in the Early Years to create ‘Sensory Mummy Music’ incorporating Music, Movement and Sensory Experiences. I absolutely love being able to go into 2 different Early Years Settings and do these sessions, it helps so much to stay connected with the Early Years settings, it makes me feel less worried about missing out while my children are still young. I am unable to return to part time work until Moo is at Pre school so this type of work suits me well. This has also allowed me to build my confidence, which was low after having my second child.
  • I finally accepted that ‘this is me,’ ‘this is who I am’ and that I shouldn’t have to pretend to be someone I’m really not just to please other people. In the past I have tended to act differently in front of different groups of people. At school I had 2 very different friendship groups, keeping up a pretense is absolutely exhausting! At the same time as starting my Blog, I also created a brand new Facebook account, with only really people I do class as true ‘friends.’ We’ve had a lot of emotional upset in our little family this year, some very important truths came to light, facts were not believed by others, either this or a complete denial to accept truths that didn’t want to be listened to. I’ve had to protect my children and with having a daughter like Lou, who is extremely impressionable, we’ve had to restrict her from interacting with certain people to protect her. Having to agree with a certain type of individual for a very long time had taken its toll on me and I had to block a great deal of negativity in order to function as a mummy for my children, which is my ultimate priority. Not long ago I was referred for some adult testing – more details I do hope I have the confidence to share in 2017.

  • Lou started school! 

She has done incredibly well in her first ever term of school, she settled really well after a lot of worrying on my part! 

She also took part in her first school Nativity, she lead the Wise Men from one end of the Abbey to the other and looked very proud about it! 

This was such an achievement for our girl as she has previously struggled with sensory overloads in buildings such as churches.

  • I have been able to spend time at home with Moo as well as keeping my brain active via the Blog and music sessions. When Lou was the same age  (21 months,) I was working full time. 

One thing that has recently come to light was knowing my own limits. I have always been known for ‘doing too much,’ I sort of struggle to know how much is too much. I have recently taken on quite a few roles as I was feeling confident. What I do forget is when the pressure mounts up, especially at a time of year like Christmas. I know that I’m struggling when my brain feels like it’s about to explode and I become snappy. my parents are now experts are recognising when I’m doing too much and will remind me so that I can take stock and evaluate the current situation.

Going into 2017: 

  • My Blog HAS to stay! It is my therapy and I’d be completely and utterly lost without it! 
  • My business will remain – I love working with the children – after a few year’s practice I feel that the planning and delivering of these sessions are like second nature and I don’t tend to feel stressed at all! 
  • I like to still feel connected with Early Years Settings even though I’m not officially working in a setting. I will continue to run my Facebook group ‘Worcestershire Early Years Professionals.’ And continue with my role as Committee Secretary to a local Early Years setting. 

      I recently wrote a post titled: ‘Feeling Lost’ after Lou was discharged from Occupational Therapy and Family Support, due to recent Children’s Centre funding cuts. Due to this, only last week, I almost entirely gave up my fight for Lou, I was beyond frustrated. I often think of looking after Lou’s needs as a full time job in itself: Attending appointments, chasing appointments and reports, making visual supports for our home, researching activities for Lou’s ‘Sensory Diet’ and carrying out activities that support her Gross Motor development and calming activities, etc. Especially during school holidays, any remaining energy I have to focus my remaining energy on her. 

      It happens once in a while where I think I’m Superwoman! Adding in quite a few other roles, but I’m already doing more than enough, and to stay on top on my game – especially in terms of supporting Lou, It’s essential that I rein it in and say to myself: “I’m doing too much at this time.” 

      I’m not ‘Superhuman’ I simply cannot doing it all… 

      Thanks for reading 🙂 

      Feeling lost…

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      I like happy posts – however this is my therapy – my way of expelling thoughts going around in my head all day…

      …It’s the countdown to Christmas my mood should be happy – full of the joys of the season,

      But, sadly, my current mood:

      Frustrated, disappointed and most of all angry.

      I have always been so calm, too calm, sometimes.

      I feel so frustrated and angry I feel like giving up the fight for Lou and I hate feeling like this. It’s almost 3 years now since I first started noticing her ‘Sensory Sensitivities,’ we had started to get somewhere with a referral to Occupational Therapy and we were receiving support in the home via a Family Support worker, anyone who knows us will know that Lou complies on the whole at school, holds in her sensory overloads all day (which is bloody hard to do – I know as I’ve done it myself for a very long time,) and offload as soon as she gets home, it’s taken me years to be believed that this is the case after our parenting skills have been knocked several times, which doesn’t do much for self-confidence and constantly makes you question; “am I doing this right?”

      But in just 1 week Lou was discharged from both Occupational Therapy and Family Support, OT because she is ‘fine’ at school which I am happy about, however we have received little help in the home – I have been left to pay for a £180 weighted blanket, we were not given any opportunities to rent or borrow sensory equipment to help us at home, even though she has been provided with items at school. Family Support has been cut due to there now being focus on ‘targeted families,’ to which I still do not fully understand the qualification for this. This has left us at the same point as this time last year really, which is beyond frustrating. I can clearly see huge traits of ASD, in particular PDA (Pathological Demand Avoidance) but I am again left to feel like I’m making all of this up and that I’m not believed as these traits are currently only being shown at home. When working in childcare and education I wasn’t sure about labelling children, but I now truly believe that, in order to help and support children in the best way possible, the earlier a diagnosis comes, the better. I’m not sure that I can withstand another year of this fight, I’m exhausted, and so is Lou’s daddy. I would sometimes like to shout at the top of my voice “I’M NOT IN THIS FOR THE MONEY!” As we don’t qualify for DLA, what I am continually fighting for is the recognition that children can be very good at hiding and masking their difficulties, what I am most desperate to avoid is problems in the teenage years. To receive support early to avoid this.Sometimes I have been asked: “How do you know that she feels this way?” Especially if a particular behaviour hasn’t been observed during an appointment, and my answer is always; “because I felt the same, I masked and I suffered a LOT for not telling people how I really felt,” this is where a lot of my frustrations lie.

      As people may be aware, that I’ve been helping with the campaign to Save Our Worcestershire Children’s Centres, due to the vital support my family is now missing out on, but also other families out there that are going through the same.

       

      Here is an Email I sent this morning to Cllr Marc Bayliss from Worcestershire County Council:

       

      Dear Mr Bayliss,

      I still have questions regarding the recent funding cuts for Children’s Centres in the Worcestershire area.

      I am currently very confused about the current system that was previously referred to as ‘Early help.’ In the past week professionals such as our Health Visitor, Occupational Therapist and School Nurse have all informed me to contact ‘Early Help’ to refer my family back to the Family Support service due to the impact that my daughter’s behaviour has on our whole family in our home environment. It was left to me to explain to these professionals, that my family no longer ‘qualifies’ for Family Support, why haven’t these vital professionals been informed of the new system now that there have been funding cuts? How many more families are being referred to ‘Early Help’ to then be told that they are not a ‘targeted family?’

      As you are aware, as I shared my story at the scrutiny meeting held at County Hall, my daughter has additional needs and we now have no support at home for a child that displays extreme behaviours. Her school cannot support me in the home as there is only so much they can do, due to the fact that my daughter complies on the whole at school, she will hold in her ‘sensory overloads’ all day and then ‘offload’ as soon as she gets home. What support do you suggest that my family will now get? Or do we just get left to struggle through, and let every day at home become a struggle, with myself and my partner near desperation? What quality of life will this leave both myself, partner and 2 young children? If I am left stressed and depressed what effect does this leave on my children? It is heart-breaking. I only wish the people making these sorts of decisions could have a window into our lives just for one day to see how difficult things really are.

       I would like clarification to what the label of a ‘targeted family’ actually means please? I am just concerned of how many other families are missing out on support at home, especially those parents with children that have additional needs. 

       

      Nicki Perrins.

       

       

      It is so upsetting that for someone who finds life a little hard anyway (for various reasons,) that the ‘system’ is making it even harder 😦

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      Thanks for reading 🙂

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      This used to be my childhood…

      Me at 3 years old, in 1985. Check out that dress!

      It’s amazing how certain smells and sounds can trigger memories from childhood. Every time my own children get out the PlayDoh it takes me right back to creating Ice Creams on our PlayDoh ice cream maker! 

      Here is a collection of 1980’s and 1990’s memorabilia – namely toys and TV programmes.

      I have noticed lately, that certain toys have a revival lately such as Sylvanian Families, My Little Pony and Trolls.

      Barbie

      Here I am at 4 years old, and my sister at a year old!

      My first memory of a Christmas present was my first ever Barbie, her dress was Glow-in-the-dark and I cut her hair short as I thought it would grow back again! 

      Here’s what Barbie looked like brand new! 

      Cabbage Patch Dolls:

      I pestered my parents constantly for a ‘Cabbage Patch Doll,’ my mum was not keen on them at all! looking back they are an acquired taste! I named her Rosie and she was my first proper dolly. 

      Keypers

      This Swan ‘Keyper’ has great sentimental value for me as it was the last present my Grandad gave to me before he passed away in 1986. I can still remember the distinct sweet smell of the vinyl it was made from, and I kept many little trinkets in the swan’s back that could be locked with a special key. 

      This was my sister’s Keyper Rabbit.
      My sister (4) and me (7)

      My Little Pony:

      My little ponies were a toy that I collected many of, I must have had around 50 altogether. I really wish I’d kept the originals as my daughter is currently really into My Little Pony. 

      Jem the cartoon and Jem the doll: 

      “Jem, also known as Jem and the Holograms, is an American animated television series that ran from 1985 to 1988 in U.S. The series is about music company owner Jerrica Benton, her singer alter-ego Jem, her band the Holograms, and their adventures.[3]

      Source: Wikipedia.org Jem (TV series)

      I had a ‘Pizzazz’ doll just like this one!

      I had a Jem lunchbox that I used to take to school.

      I recently turned on the TV movie channels to find that there has been a movie remake of Jem:

      Jem and the Holograms (2015.)
      Minnie Mouse roller skates:

      Roller skates were very popular in the 80’s! Even though I was a child who preferred not to take risks, I was determined to give these a go! I did receive a fair amount of scrapes and bruises from falling off ! 

      Thundercats:

      “Thunder, Thunder Cats!” 

      This was one of my all-time favourite childhood cartoons.I can remember tuning in every Saturday morning to watch! 

      Female figure I had from Thundercats – called ‘Cheetara’

      Sylvanian Families: 

      I loved collecting the various families of animals – bears, rabbits, foxes, etc. 

      My sister had this barge and I do believe it may still be hanging around our parents house! Another revival and Sylvanian Families are a current favourite of my 4 year old – if only I’d kept them! 

      Spokey Dokeys: 

      My bike was covered in these! What a noise it must have made! We collected them from breakfast cereal packets and we must have got through a fair amount of cereals! 

      Reflectors like these were also popular – my bike was also covered in them! 

      Fashion Wheel

      I spent hours and hours using this Fashion Wheel, where the wheel would spin for various outfits and accessories to be traced and coloured in.

      Rainbow Bright: 

      “Rainbow Brite, is a media franchise by Hallmark Cards, introduced in 1983. The animated television series of the same name first aired in 1984, the same year Hallmark licensed Rainbow Brite to Mattel for a range of dolls and other merchandise. A theatrical feature-length film, “Rainbow Brite and the Star Stealer” was released by Warner Bros. in 1985.”

      Source:

      Wikipedia.org Rainbow_Brite

      Polly Pockets: 

      A lot like my daughter likes smaller toys such as ‘Shopkins’ now, when I was younger Polly Pockets were a huge favourite of mine, collecting around 20 different cases. 

      I’m pretty sure my mum still has some of my Polly Pockets at her house! 

      Trolls

      I had around 100 trolls! Another item that I used to love to collect, and currently having a huge revival now via the Trolls 2016 film. I handed a box full of trolls over to a charity shop – just a bit gutted now! 

      One of my favourites – Wizard Troll (By Ross)
      I had a baby troll just like this one

      Sindy

      This was my ‘Pop Star’ Sindy. I loved her sparkly hair.

      My sister and I had a Sindy house just like this one Christmas.

      Game Boy

      This device started my love of Technology – playing games such as ‘Super Mario’ and ‘Zelda.’ Released in Europe from 1990.

      I must try and keep some of my daughter’s toys as you never know when they may come back around again ! 

      Deep in thought at 5 years old! (I was miserable as I had Mumps!)

      Thanks for reading 🙂 

      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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