Showing posts with label SPD Special Needs. Show all posts
Showing posts with label SPD Special Needs. Show all posts

22 February 2020

Lola's Wobbly Lunchtime - Pre order





Will YOU be a part of the project that hopes to change autistic lives for the future? We have already published Book 1 - Playing with Bourbon Badger in the Autism with Lola children’s book series and for the Autism with Love Publishing® team to be able to continue helping the next generation understand and accept differences in neurology a kickstarter campaign has been created and is ready to launch on 24th February.


"Kickstarter?" You say! What is that?

Well, let us tell you the basics. We set a target goal of how much money we would need to complete stage 2 of this initiative and if we DO NOT reach that set GOAL - nobody is CHARGED!




But this isn’t fundraising in the typical way that you see on-line when people ask for donations for nothing in return. We are not asking you for money in return for nothing. OH NO! 

Every backer will receive a reward. Wether that is at the basic level and you donate £5 for a special mention and a pin badge of your choice, or you pledge £15 for a first edition signed copy of Book 2 - Lola’s Wobbly Lunch Time and some extra EARLY BIRD goodies should you pledge in the first 24 hours, the choice is yours. 


There is a reward for EVERYONE! (A sneak peek of some special rewards below)



Its basically a fancy PRE-ORDER service which enables us to get more products out to you more quickly and of course releases the financial burden on the Autism with Love Publishing® founder Jodie Isitt so that she is able to continue writing and building this BRAND without financial restrictions 

Of course its not all about you pledging money! NO! If you cannot contribute financially, sharing this project with others is one of the most important parts of awareness because the more people that see us, the more chance we have in succeeding. You might say that your generosity in sharing this project is the most valuable part. 




You can do this by using the sign up form at the bottom of this page so that you’re the first to know when we go LIVE. Or you can follow us on Facebook for daily updates! 



Sign up HERE for the latest news and to be the FIRST to get the EARLY BIRD discount!


And if those images weren't cute enough take a look at our video!







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5 April 2019

Autism with Lola - Playing with Bourbon Badger

The all NEW social story - With a twist!

I have designed and created these beautiful children's stories that are written in a gentle and relatable way so as to enhance the understanding of Neurodiversity in young children. Cute woodland characters will take their readers on an educational journey to embrace differences such as living with Anxiety or being Autistic, whilst teaching them ideas for kindness and creating learning opportunities  for young children which will empower them and give them the knowledge they desperately need so that they are always confident in Neurodiversity.





PRE-ORDER HERE - Autism with Love Publishing


The Dream: 

I had spent a long period of time advocating for services for my children when the time had come that I realised I had practically secured the educational provision for all of my children and our hectic lifestyle started to settle down somewhat. One night whilst reflecting on the events of the last few anxiety inducingyears I started to feel like I hadn't had a chance to chase my dreams and I simply needed to do more with my life. I knew that although I had worked hard to secure a good future for my children, there would be thousands more families like ours who would be experiencing the same unnecessaryfight that we had just reached the end of and I desperately wanted help these families but the issue that many face is too vast and I found that I was barely scraping the surface.
It was late one evening, as I desperately tried to shut off and drift into sleep that I had a sudden realisation that in order to reach as many people as I could was to focus onteaching young children about neuro - diversity. The next generation is THEbest place to start teaching diversityand acceptance and kindness 
It made me realise that when I was younger, I was NEVERtaught about disabilities which led to fear and confusion towards disabled people. I was scared. I would be devastated if any child were scared of mine simply because they were different from what people perceived to be normal I knew that I had do something to create acceptance for these children and adults who are autistic or have anxiety as well as the co-existing conditions that can sometimes segregate these people from their peers.
I am passionate that the next generation of people will be accepting, kind and equipped with the knowledge that disabilities aren't scary, and people needn't be afraid anymore. We need to talk about it. We need to learn and most importantly we need equality.

The Vision:

My vision was simple: I wanted to create some short picture books for children ages 3-9 using my daughters experiences and turning them into opportunities where the young children can learn how to be a good friend, how to be understanding and kind whilst not forcing responsibility upon them. I envisaged a class of woodland characters, where there was one main friend who could become a role model and give children the tools they need in order to learn how to be inclusive. To capture the attention of the children I have used a Rabbit as the main character which is based on Lola and then a badger to be Lola's friend. Essentially he would become a role model for the children reading these books and inspire them to understand differences whilst being kind, inclusive and most importantly what it means to be “A Good Friend”
Next I enlisted the help of an Occupational Therapist - Lucy Bates, and a Speech Pathologist - Molly Rai Dresna, who would help guide the teachers or parents reading these stories on how to deliver the books' message and use the stories as a teaching point so children can start to recognise that differences aren’t scary. Lucy and Molly have created a professionals section of the book suggesting questions and activities to fully develop the understanding of children by using recall as the main tool. Along with the professionals section there will be a range of free downloadable files to use alongside each book to make learning fun and exciting. Giving the children a physical learning experience as well as a mental one is crucial for retaining information that they can fully develop into real life skills.

The Reality:

I knew what I wanted to create however the reality of turning a fleeting idea into a fully funded, illustrated, edited and published story was a lot different to how I imagined. Creating stories that flow, don’t contradict, are simple yet beautiful has an extremely complex process. Once ideas are floated about and another change is added the story can sometimes break down which is why it is of the utmost importance to hire a critique. Laura has worked wonderfully on this project and has the same passion and vision as I have had from the beginning. Illustrations have been chopped and changed and re-designed to make the visual element absolutely perfect and true to the brand that I am trying to create.
In reality - this idea was born in January 2016. We're now in 2019 and I am very very near to having a publish date. I am so excited to get this off the ground and with a further three books already written and waiting for illustrations the whole 1st series should be published this year. I want to thank everyone who has supported me and the team on this journey from shares and likes, to the amazing team behind the scenes who have bought my dream to life!




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22 September 2018

Pathological Demand Avoidance- Non-Negotiable Behaviour - PART 3




Choosing Your Non - Negotiables



So by now, you’ve hopefully read the previous two posts:



Hopefully by this point you have learnt a few things that are important to the overall goal of reducing anxiety and that your language needs to change when speaking to an highly anxious child in order for them to be able to follow hidden instructions or comply with demands that are necessary to living a fulfilled, happy and safe life. You’ve learnt that by changing your language you child will feel less dictated to which will hopefully allow their anxiety levels to decrease to a much more manageable scale whereby they’re able to feel a little more in control of their own lives and be more approachable, more resilient, and most importantly less stressed and a LOT more happy. 

Secondly, I talked about ‘Does It Really Matter?’ Ignoring the small issues that arise that aren’t high on your list of changeable behaviours so that you can concentrate on 2-3 major ones that needed to change because of heath or safety reasons, like their personal care skills, or violence. I spoke of the importance of letting everything else go because it was necessary for the child to realise that your low demand approach and your language direction was going to be a consistent and reasonable change that would eventually become normality for them and they would begin to trust that actually they could make their own choices and they could be in control of their lives by making the right choices. This would also teach them the crucial part to this new strategy which is the end goal, that your Non - Negotiable behaviour rules could be followed as a result of the low demand environment and language change that had taken place. 

Having a low demand environment for an anxious child will slowly but surely allow them to comply with the things that you simply cannot let go.


Our Non - Negotiable rules and the reasons why we picked them. 

1 - No Violence. EVER. This includes self - injurious behaviours although theres no consequences for this but a lot of Love and understanding instead. 

When Lola was three years old her sister Connie - Mai was born. This was the worst time of our lives and it should have been something we cherished and remembered for all of the right reasons, instead of all the wrong ones. When I look back on those days I feel relief that we’ve made it this far and we have only had ONE majorly serious incident where Connie had to have an operation on her finger nail as it was slammed in the bedroom door. From that day on I knew that things desperately needed to change so that I was able to keep my other children safe and for Lola to be able to find joy in life and not be angry, and distanced and frustrated 100% of the time. This is why no violence is tolerated and will always be my most important non - negotiable.

2 - She MUST brush her teeth at least ONCE a day. 

Lola has had some difficulties with her teeth, some problems from not brushing properly or regularly. Other problems are due to her delay in development and her teeth not forming properly. When my children were younger they were never allowed sweets and chocolates daily. They were also never really allowed juice on a regular basis. I told people that until they were old enough and responsible enough to CHOOSE to brush their teeth regularly and properly, then and only then could they choose what they ate or drank. Of course as Stanley got older and more independent we became more relaxed about his boundaries on Chocolates and juices and so naturally without even realising it, they were all eating what they wanted. This needed to change because the demand of brushing teeth, the sensory issues that go along with it like the foaming of the paste, the taste and smell made things pretty difficult and we needed to introduce this as a Non - negotiable. The consequences for this are choice based. She can choose to brush her teeth and have no dietary restriction or we simply do not buy it or she isn’t allowed it. 

Sure she sometimes resists, and sometimes it causes a meltdown, however once we’ve passed the worst of the introduction then it gets better. She is in control because as she has chosen to brush her teeth she can also choose what she wants to eat. And THAT is the beauty, because although it sounds like a reward based approach, we actually reverse the reward. So when the first two steps are taken and achieved you can eventually tweak this into a way thats more manageable, so instead of giving the cake or sweet as a reward, you allow the cake or sweet, but only on the condition that teeth are brushed after. If teeth aren’t brushed after then Lola knows that the next time she asks she will have to brush her teeth before or she wont get it.

This whole approach HAS to be determined by your child and how they can cope going forward with all the changes. It has been a long road here for us, like I said previously there is no magic wand. Things DID get worse before they got better but they DID get better and that is why I want to share our story. On a whole at the moment, and the boat hasn’t been rocked yet, she is in a GOOD place. I am so proud of her and how she now manages a non-negotiable. 


Next week I am going to write about when and how you can start to increase the demands and change non-negotiable rules and sum up the whole series of blogs and elaborate on our change in language and the types of behaviours we ignore or the instructions we leave out as they aren’t necessary in order to create a low demand, low anxiety household for Lola to be the awesome little girl she is growing in to. 

To be sure that you won't miss a blog post please subscribe to follow our journey, and my inbox is ALWAYS open for any questions or advice you need.


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20 September 2018

Pathological Demand Avoidance - Reducing Your Child’s Anxiety - PART 2


Does It Really Matter?





I am a little overwhelmed that there were so many people reading the introduction to - Reducing Your Child’s Anxiety - and also so sad that so many of our children are struggling so terribly. I sincerely hope that the strategy I am about to share with you gives you an extra option in your tool box and a little hope that something, anything, just may work to help reduce your childs evident stress and mental exhaustion so that they can gain some relief from their anxiety. 

Sometimes when you try a new way of parenting or some different strategies your child’s anxiety may increase a little before you see any improvements, and I want to reassure that this is completely normal. Its a different way of parenting and things are changing and it can be a little confusing for the child to comprehend straight away that actually they can control this and they can trust you. Its not about allowing your child to get away with everything - although sometimes when you’re tired I totally understand that it can feel like that at times or that people are judging you for your parenting decisions. 

This is YOUR child. YOU make the decisions in the way that you help manage your child’s difficulties and if it works then don’t allow anything or anyone to challenge what works for your family.


There are three steps to the parenting style that we use and they need to be used in the correct order, consistently from day 1.

STEP ONE - Choosing Your Three Non - Negotiable Rules.


The most important thing Is to sit down with the people around you, who live with you, or have parental responsibility and work out the Three (maximum) issues or behaviours that you would like to turn around, or change or eliminate. You cannot have more than three because if you do you’ll be back at square one and things get complicated and theres too much to tackle at once. Creating three non-negotiable behaviours, or challenges that are essential and have some sort of consequence - and this could be a natural consequence (which i’ll explain a bit more about later) 


The consequence should be treated with caution though. You shouldn’t consequence a child with things that are involved with a sensory diet, or is a repetitive or calming activity that your child uses as part of their routine, and this is where consequences can become a bit complicated. 

You don’t want to introduce these non - negotiable behaviour “rules” (pssss don’t call them that to the child it will only increase their anxiety) - and then take away their I-Pad which helps them sit still for more than two minutes, or keeps them calm in stressful situations and then end up not only stressing your son or daughter out, but punishing yourself and your family at the same time. 

Take away their pudding, or their after School treat. (as long as that isn’t routine based also) You see, this can be quite confusing and the structure of this can be changed and alternated as you wish and as you grow together. You all want to be comfortable in the knowledge that your child isn’t distressed, and the family aren’t all walking on egg shells.  

For example - When Lola becomes violent, which is our top non - negotiable I make sure that the others are okay before I remove Lola from the room and take her to her bedroom. That is her consequence. However, because Lola doesn’t like to be on her own and will not stay there I have to be with her. I use no spoken language and avoid eye contact. Sometimes I’ll make myself busy with tidying around but other times I will sit there and wait until I know she’s going to be responsive to physical contact. Then I will calm her down before I speak to her about what happened. Sometimes this part of the process can take the longest, because she may not be responsive to verbal communication for a long time afterwards and so in these circumstances I will leaver in her room, put her TV on and allow her some time to process whats happened on her own. Violence is NEVER accepted in our house and I know that I am fortunate enough to be in a position where Lola is not stronger than me, and has very rarely been violent to me directly, so this advice may not be of benefit to some people who have older or much stronger children than myself, but you can adapt these techniques to suit you and your child as long as its benefitting you. 

I will always have a conversation with Lola about what happened and sometimes she doesn’t remember, which is quite common for children with Autistic Spectrum Disorder particularly when they’ve been violent as part of a meltdown. 

So choose wisely, and carefully and be realistic. We want this to succeed, and for it to succeed you need to lower your expectations considerably for this to have the desired effect. Remember what it is you’re aiming for and the key point to remember when implementing these ‘non - negotiables’ is that anything else is considered IGNORED. Ask yourself continually “does it really matter?”

“Does it really matter?” - If she hasn’t brushed her hair.
NOPE

“Does it really matter?” - If she is wearing shorts instead of the pretty dress you picked out for her for a princess birthday party. 
NOPE

“Does it really matter?” - If he wants to lay in the middle of the room on the floor in the way of everyone else lining up cars or books. 
NOPE

“Does it really matter?” - If he wants to wear odd socks. 
NOPE

“Does it really matter?” - If she always has to be the first one out the door. NOPE

“Does it really matter” - If they asked for ham and you made ham, but now they want marmite. 
NOPE

They need to see that not everything is a demand. By using the examples above I hope that you can the positive instead of the negative in them and that is key to changing your mindset and your language. So he wants to wear odd socks, at least he got them on! Yes she did ask for ham, but if it encourages her to eat on time then hell I am going to make another with marmite in it. “DOES IT REALLY MATTER?” is a question I find I ask myself almost automatically now, and that also came with the notion of “If you’re going to end up saying YES, then why bother saying NO in the first place.” Honestly I cannot stress the phrase of “DOES IT REALLY MATTER?” any more importantly than I have.

Please subscribe if you want to read more about Reducing Your Child's Anxiety, Just simply enter your email address in the box on the right hand side of the page and you will never miss a post again. 

Lots Of Love....


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26 February 2018

Why Would You Want To Label Your Child?



I don’t actually, and ill tell you why - I don’t like the term ‘label’ and how it is defined by the people who choose to ask this question.  Its like a dig, an insult, its like they’re implying I want these ‘labels’ for selfish or unorthodox reasons.



Autism is not a ‘label’ - My daughter didn’t get a diagnosis so I could make her wear a signboard of her difficulties.

Attention Deficit Hyperactivity Disorder is not a ‘label’ - my daughter didn’t get a diagnosis so that I could excuse her behaviors.

Anxiety is not a ‘label’ - My daughter didn’t get a diagnosis to encourage people to be soft.

I could go on forever right? Please insert any diagnosis and any theory you may have and then listen carefully. These disorders, disabilities, special needs, extra needs, or whichever other definition you wish to use aren’t labels, they aren’t excuses, and parents like me whose children have these diagnoses are sick of hearing people call them labels. Professionals do it, friends do it, acquaintances do it without any thought or feeling for how this statement comes across to the people it is aimed at.

It is hurtful, it is judgmental, and it is completely unjustified.

People may say, ‘why bother having her labeled when you are doing everything for her anyway’ or “why do you have to label her when the school are giving the extra support’ and ‘what’s the point in a label all it will do is hinder her in the future with prospective jobs or relationships’ It will NOT hinder job prospects, and it will not hinder future relations, My child is who she is and I am proud of that, she will be proud of who she is too, because i will make sure of it.

Having my child diagnosed (which I sought out and fought for might I add) wasn’t for the benefit of myself; it was for the benefit of my daughter and the future she rightly deserves.  Having a diagnosis enabled her to have access to other services she would not have received otherwise. Having a diagnosis enabled me to help others understand her appropriately and begin to use the correct strategies for her conditions. Having a diagnosis has enabled me to be signposted to the correct support groups, and training courses that I wouldn’t otherwise have been able to access. These ‘labels’ do not hinder my child’s future they benefit it. These ‘labels’ are needed for support and understanding. Not having a label will be used against you for obtaining further assessments and referrals. Even though a diagnosis is not legally needed for obtaining support and assessments, you WILL be told this because funding is critically low, and as a diagnosis is proving more and more difficult to obtain therein lies the problem of the merry-go-round service.

Ever heard a teacher say:

“Im sorry, your child is not diagnosed so we cant refer her for this assessment”

Or the Special Educational Needs Co-ordinator say:

“im sorry to be able to have an educational psychologist assess your child they need to have a diagnosis of X, Y, Z first”

Or a Headteacher say:

“I’m sorry we cannot make an application for your child for an Education, Health and Care Plan, because she doesn’t have a diagnosis”

This is NOT true!!!!!

But you see, who are we to question these professionals’ rules? On the start of my journey I was told all of these. All of them are NOT true. Nothing is based on a child’s diagnosis, but to access the support and assessments it seems we need them. Even though this isn’t what it states in the SEN code of practice, it seems that that ‘Label’ is actually necessary.

Please don’t assume that I am labeling my child for other reasons other than to benefit her future, Please don’t think that these diagnoses are pointless, they are crucial for being able to access the correct support, and referrals and other assessments needed to be able to better our current situation and lifetime opportunities.

Do you feel like this? Have you been in a similar position? Please share your experiences in the comments.


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14 February 2017

Institutionalising Disabled Children: Why Early Intervention Is So Important.


HOT OFF THE PRESS: Lenehan
 review calls for urgent action.

A review published by the Department of mental health, regarding the care of disabled children and young people is calling for urgent action to prevent these children and young people from being institutionalised at a young age. See the original article here:


I didn’t get the memo sending us back to the dark ages? Institutionalised? A recent article even stated that these children are being moved some 300 miles from their family home because there are no spaces at local care homes.







These children do NOT need 
institutionalising.

They do NOT need locking away.


They need EARLY INTERVENTION.


These children and young adults are our future generations and with the ratio of children being diagnosed rapidly increasing, something needs to change NOW.

Why is it that after all of these years, I am still hearing stories from parents – who are overly concerned about their child’s development – that after referral they’ve been discharged from services and assessments, because their child has shown a certain amount of empathy, or had normal eye contact, or didn’t show any repetitive behaviors?

Why are so many services disregarding parental observations, and instincts based on a half hour meeting with a child they have only known through paper?

When we were first referred to the community pediatricians, we were asked a lot of developmental questions, a physical examination was completed, and some educational tests were done. We were discharged at 3 years and four months, with a child who was:

‘An extreme version of
normal’

We were told to go a parenting course. The consultant was so judgmental, and unhelpful that from that one 30 minute appointment I had lost all faith in a system designed to help and intervene.

My daughter and our family were at this point at crisis stage, the HV actually said to me, that if my Mental Health wasn’t stable she wouldn’t have been leaving me. She was worried for my family an I because of the lack of support and the deterioration in my child’s and my mental health.

Not one single person believed me! I was on my own and that is one lonely place to be.

Eventually things had got so bad that they were forced to refer her again as an emergency and at four years nine months she was finally diagnosed. This is a full two and a half years after I had asked for help.

My
 natural maternal instinct as a mother was spot on.

And it has been each and every single time I have suspected something amiss with her. She now has a multitude of diagnoses, learning difficulties and has just started a special school, which she is loving. I am hopeful for the future. But I am also very bitter that no one listened and we couldn’t get that very early intervention that we so desperately needed. The refusal to assess her early, has led to us missing out on, or a delay in every single service that we may have been entitled to.

Mentally she is three years behind her
peers, but physically she is able. Which leaves her vulnerable in the way she
is treated and peoples expectations of her.

I spent two years of her life researching and googling, and fighting for her rights. Those years we will never ever get back, but it was essential for our future and I would do it all over again if I needed to.





My advice is to do your homework, join
support groups, which can be found in the search option of face book and ask
lots of questions, document everything. Keep a behavior, sleep and food diary - know your stuff. If you go to your appointment where the opening line is
“There’s something different about my child” and no real explanation of this
then expect not to be taken seriously. Especially if your child has the ability
to mask those subtle symptoms. Know what you want, don’t be afraid. You need to
be strong and assertive. I wish any of you the best for future appointments. I
hope that you are taken seriously and I hope that you are successful in getting
early intervention for your child, because in my opinion it is KEY.




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5 February 2017

Autism: Don't Force Me Into Your World Before You've Experienced Mine.




I am a strong believer in Early Intervention for children diagnosed with Autism and in fact any other condition that a child is diagnosed with that requires extra support.

Early Intervention doesn’t have to mean thousands of pounds forked out by the NHS or the LA for access to specialist treatment. It doesn’t necessarily mean that the child has to have XYZ therapy to be able to access life, as we know it. Although that would be fabulous wouldn’t it!

Lets go back to basics here, because all these children really need is support and understanding from the people who are with them the most, parents, teachers, grandparents, peers and siblings.

Children who are forced to conform into a society that they do not understand are going to lead a very confused life. It will create greater problems and difficulties for those being made to conform to anyone’s idea or normality. Suppressing a child’s way of life is creating a monster. A Great big monster that one day simply will not be able to cope in a world that they were forced to live in.

Entering their world and seeing things from their perception will only create a positive outcome. Before you can lead a child into “our world” or “your idea of normal” It is crucial for you to experience their “Normal”

Experiencing the things that the children take great pleasure in will enable you to form a trust bond with that child and in time, when the child knows that you understand they will begin to WANT to enter your “Normal” Tell me, please, instead of trying to make children sit still on their chairs, hands in their lap, looking alert and taking everything in, why can’t you lay on the floor with them and roll cars backwards and forwards for 10 minutes?






‘Its fun watching these wheels going round, the colors on the metal are creating pretty patterns when they hit the light shining through the windows and are spectacular to look at out of the corner of my eye, the reason I do it so much is because I am enthralled at how these wheels work, and absolutely mesmerized by how the light shining on this piece of metal can create rainbow patterns on the wall that otherwise is colorless. I want to show you, what I see when I lay here, I want to tell you, but I cannot find the words to express how I feel, sometimes I just wish you’d lay here with me, is that too much effort? Is it too much to ask? Do you not see what I see?’

‘If you cannot see what I see, how do you expect me to see what you see?’

‘Life is a two way street you know, I don’t want to be outside the classroom because I cannot sit still whilst you read a story. I really don’t want to be over here on my own, lining up these books whilst everyone else is taking part in-group work. I really just want to be included somehow but that’s up to you, because I’m still little you see, and I haven’t yet learnt how to problem solve. Could you help me, just a little? I promise that soon ill try the things that you’re asking of me, but I just need you to understand and accept me first.’


The amount of children being diagnosed with autism is increasing rapidly, as research grows and more is understood, more children are identified as having autism than ever before and we really need to change our outlook of “Normal”

Children need extra support in schools, the SEN budget has been crippled to such an extent that even the children with more severe needs, are being turned down for extra funding. Early intervention, early understanding and acceptance is vital. For if the child doesn’t get these important things early on in their life and in the educational setting, behavior will spiral out of control, the child ends up being excluded for behavioral reasons and moved to schools with policies which completely defy the techniques that are necessary for our children.

Its quite simple really, we need to stop making these children suppress their natural instincts, their natural abilities and their outlook on the world. Their way isn’t wrong, or bad, it’s simply theirs. Who are we to take that away from them? Why should we force them into our world without fully experiencing theirs first?


This post was originally written for and published by Autism Awareness

Mudpie Fridays
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