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Langar Church of England Primary School

Autism

Amazing Things Happen - by Alexander Amelines

Professional category finalist Alexander's film gives an uplifting introduction to autism for young non-autistic audiences, aiming to raise awareness, understanding and tolerance in future generations.

What Does it Feel Like to Have Autism? | Autism Awareness | Operation Ouch | Nugget

Subscribe for more crazy, fun and exciting science facts: https://goo.gl/4XwBh1 You or someone you know may have autism. Dr Chris and Dr Xand of Operation Ouch find out what that feels like. Nugget is a goldmine of some of the best TV shows, great for kids to learn and laugh outside of school.

Autism, ADHD….. and Twins!

 

Harrison and Fynn have been on what can only be described as a journey that started before they were even born!

 

As identical twins they suffered a very rare complication during pregnancy known as twin to twin transfusion syndrome (TTTS), where the blood flow to each twin from the placenta is unbalanced. With even the best care in the world, it unfortunately only has a 10% survival rate at best.

 

Harrison and Fynn miraculously defeated those odds and as usual, they had their own ideas on how to do it - by making a surprise very early arrival weighing in at less than 3lb’s each! The TTTS was immediately obvious, with Harrison born in heart failure due to the strain of too much blood in his system, and Fynn needing immediate life support and an urgent blood transfusion due to the lack of blood in his. They just loved keeping me on my toes from the very start!

 

Behind the scenes they have some complex medical issues and spent much of their early years in and out of hospital. In fact, it literally took until they were almost 3 years old to be able to say they had spent more days of their life at home, rather than in a hospital setting! But as their major health concerns started to settle, their SEN journey just began.

 

My boys were diagnosed with autism just before they started at Langar school in 2020. An additional diagnosis of development-coordination disorder (dyspraxia) was made in 2021, and the final piece of their SEN puzzle, ADHD, was confirmed this year.

 

So what does this all mean for me as a parent?

 

I’ll be honest – there’s the good bits, the bad bits, and the wondering how I’ve managed to keep my sanity for so long bits, all mixed in together, often within the same minute!! And the thing that always amazes me - despite the boys being identical twins with essentially the same DNA - they show their autism and ADHD  in completely different ways to each other. Weird right?! That means we have to look at their SEN needs from very different angles, as what works to help Harrison, won’t necessarily also be the right thing for Fynn.

 

Thanks to my boys though, through the years I have now become a dab hand at many skills I never thought possible.

 

I probably know more about dinosaurs than even David Attenborough himself thanks to Harrison choosing that as his special interest topic many years ago. And once my boys are into a topic, due to their autism they go all in! Think you know about dinosaurs? Well Harrison knew not only their names, but where they lived, the period of history each were from and their diet to name but a few facts. And what’s more, he expected me to know all of this as well (google to the rescue…!).

 

I am the master of holding two completely different conversations, all at once! As my boys struggle to hold in their thoughts long enough to always take turns in conversations due to their ADHD, and frequently need to tell you everything (and I mean everything!) about their learnings thanks to their autism, you have to become pretty adept at listening and replying to them both at once. I just have to make sure I agree and disagree at the right place, or my second ranking conversation skill of “the

speedy backtrack” then needs to come into play as well! A helpful skill to have in your back pocket when you accidentally say something that may act like a trigger.

 

 

Octopus? You’ve got nothing on me! The ambidextrous, multi-handed tasker I had to become when mastering the art of NG tube feeding two little ones at the same time, on the go, whilst probably also trying to open doors, do up two car seats, grab some shopping, a sip of cold coffee and play with toys all at the same time.

 

The eyes in the back of your head trick for two boys who are constantly on the move and often have little danger perception – Well ask me a week ago and I would have thought I had that skill nailed better than John Wick on top form, until Fynn came careering past me down a hill on his bike at 100mph towards a lake whilst I was helping out Harrison. Yeah, maybe I still need to work on this one!

 

And patience. Wow…. I didn’t realise how little I used to have before my boys taught me how to just embrace it when things don’t quite go to plan, and not to stress the small stuff. This has probably been my greatest life lesson of all.

 

My boys have such strength and resilience that they amaze me every day with their achievements. They show love beyond bounds and quite frankly, I couldn’t be more proud of them if I tried.

 

But I guess I should probably just do a little reality check here too, as it’s not always sweetness and light being a SEN parent. It’s hard….. Very, very hard.

 

I don’t think silence is something that ever exists when my boys are around. I always find it funny how two children with significant noise sensitivities, can make so much noise themselves!!

 

Organized chaos is probably quite a rounded description of how my house looks at the end of each day, with multiple started and not finished tasks and games lying in the wake of both boys. They get easily distracted from an activity due to their ADHD, so rarely is anything played with for more than 10 minutes at a time.

 

Sleep, my old friend, oh how I miss you! For most parents the days of sleepless nights end as their children come out of the baby stages. But for those of us who have children with autism or ADHD they just become the normal as these special brains just never have an off-switch, even for sleep.

 

Plans and days out, yeah they used to be so simple, but I now find it a massive achievement just to get past the reception area of new place. Trust me, the National Space Centre would also like us to succeed in this achievement there too one day, as the sound of a meltdown in their entrance echo’s pretty loud and good! But in all seriousness, made, delayed and cancelled plans become a normal part of life as sometimes these “fun” days can just be too much for my boys senses to tolerate.

 

Simply just heading into a shop at the moment is a no-go zone, as Fynn currently finds all shops completely overwhelming. And finally as a SEN parent, I am sure most can relate to the feeling when you are able to stand in the middle of a field, filled to the brim with other parents and children, yet never feel more alone. Watching as your children find it hard to integrate, struggle to be fully socially accepted by their

peers who often don’t understand their quirks as they are just children themselves. That is difficult beyond words. Being the parent who can’t stand and have the casual conversations with other adults as you are either needing to monitor your children, sort something for your children, initiate play with them as they struggle with that element, are being interrupted by them as they sometimes just don’t have the patience to wait, or are being dragged away to leave as they have reached their social limit and need time out. That can all lead to a social drain for a SEN parent that is incomprehensible until you are the one in that position. It’s the side that is often well hidden and rarely noted, but probably for me is one of the most difficult parts. Having a child with SEN can bring so much to your life and so much appreciation of things that likely would have gone unnoticed, but it also comes with difficulties. Having support is vital.

 

Langar School have been there for my boys since the start of their school journey and have helped to build my boys into who they are today. Harrison and Fynn entered the reception class still wearing NG tube’s daily, with Fynn needing to be fed through his during school hours. This wasn’t a block for my boys attending Langar, it was a difference that was wholly embraced, with staff trained to be able to do their medical care’s in the classroom setting.

 

Fynn started school being non-verbal, meaning he could not hold or return any conversation. Harrison was only just ahead of Fynn, with verbal skills years behind his age group. But very quickly the staff at Langar realised that although my boys may not talk or always interact, they listened. And from that building block, so started the journey of adaptions which have been made to allow my boys to still access learning, but maybe in a different way to many of their classmates - shortening their focus sessions to within their concentration limits, allowing them to get out of their seats and move around if needed, giving them access to a preserved quiet space within the classroom, and knowing through their relationship with my boys, that despite them maybe not sitting still, not being within the main group, or making eye contact, they were still listening and still learning like everyone else.

 

Collective worship and special group events that are an important part of the Langar school day my boys have found difficult due to sensory overload. So there have also been strategies put in place here such as the use of headphones, or me as their parent actually sitting near my boys to allow them to still be an active part. Or, where the stress of attendance has been recognised as just being too much, they have been given breaks away from the necessity of attending.

 

My boys also access regular physiotherapy sessions whilst at school, alongside being allowed to wear clothes and shoes that are maybe not part of the uniform policy, but that on a sensory level mean they can concentrate on what is happening around them and in their class, as opposed to focusing on the discomfort or scratchiness of a uniform item.

 

Communication between Langar school and myself as a SEN parent has been key in helping us to shape the best way for my boys to access their education in a way that embraces their SEN needs. And as a result, the changes in my boys over the years have been incredible - they have now developed conversational skills, learnt some independence, are on board with the curriculum and their SEN boundaries are being respected, but comfortably pushed all of the time. I can’t wait to see what achievements the next years have yet to bring!

Reuben has autism. He wanted to share his story with you. His mom has kindly shared her story too about parenting a child with autism. 

 

 

Reuben thinks that the video below is a good representation of what it is like to have ASD:

https://youtu.be/CZYqa9rOkDQ

 

And if you want to see the video referenced in the VR simulation:

https://www.youtube.com/watch?v=aPknwW8mPAM

 

In Reuben’s words... 

Autism is different for everyone.  

 

I struggle with loud noises like alarms, cars, thunder, and rain against a roof. The noise is too much for me and makes me feel uncomfortable. Sometimes the noise takes over me and I cannot find the words to speak.  

 

At school when the class is quietly working, I can get distracted by all the background noises I can hear. This makes me lose concentration as I can’t stop hearing all the different noises around me.    

I like having a routine, if my routine is changed, I feel unsure and sometimes scared that I don’t know what is coming next. New places can make me feel excited and worried at the same time. I worry because I don’t know what to expect.   

 

Parenting a neurodiverse child

 

As all parents know, parenting a young child is always challenging and can be exhausting. And when you are the parent of a neurodiverse child, the challenges multiply. Reuben was diagnosed with autism spectrum disorder (ASD) in March 2022. This term reflects the diversity of people with autism. The amount of help they need to function can vary widely. The term spectrum means exactly that, the degree of autism varies from mild to severe. Mildly affected individuals may appear very close to a neurotypical person and therefore the diagnosis can often come later into their childhood as it can be difficult to diagnoses with any certainty under the age of 5, which was the case with Reuben.

 

People with ASD differ from most other people in several ways, including: 

  • How they communicate
  • How they interact with others
  • The ways they learn.
  • How they behave

 

To diagnose ASD, health professionals look for two main signs. First, the child will lack the communication skills and social skills that most children have at the same age. Second, the child will show a pattern of behaviour that include:

  • Actions that are repeated over and over.
  • Rituals
  • A focus on tiny details

In children with ASD, these traits are present to a degree that affects how they function. For Reuben, this manifests itself with sensory problems. He is sensitive to lights, sounds, smells, and textures, and often seeks sensory stimulation, such as wrist bands to fiddle with. Sometimes people believe that a child cannot have ASD because they are highly verbal, and this is true of Reuben, who can be quite talkative. However, he may have lots to say about the topics that interest him, but then he can struggle with how to carry on conversations.

 

When sharing Reuben’s diagnosis with family and friends, we often found there was some resistance to the diagnosis as many people have preconceived ideas about children with autism or expect everyone with autism to behave like Rain Man, and of course Reuben doesn’t fit that picture in their minds. Relatives often need time to process this information before they can accept it.

 

We helped them to understand autism better by pointing them toward good sources of information to increase their understanding. Although some people might find misinformation on the internet and share it with you, but it’s important to remember that they're just trying to help.

 

Having a child with ASD sometimes means learning new ways to interact. Because children with autism vary so much, when researching for help on the topic we found that Reuben didn’t have many of the traits we found, but we could relate to a lot of them, such as:

 

  • Not fully understanding facial expressions and other non-verbal communications.
  • Not always liking to be touched and can be uncomfortable with physical expressions of affection.
  • Reuben takes things very literal and can have trouble with figures of speech. For example, one of the doctors asked him what he thinks it means if it is raining cats and dogs, and Reubens’ response was “that’s impossible”.
  • He can be intensely interested in one thing and be unable to talk about anything else whilst that thing has his focus.
  • He can lack tact and may say hurtful things without realising it as he is brutally honest. Reuben doesn’t always respond to you saying hello to him, he’s not being rude by not responding, he may be just too busy processing something else in his head at that time.
  • Reuben seeks and relies on routine as this helps to regulate him and makes him feel safe.
     

Reuben’s ASD means that he suffers with anxiety. So going to new places can cause him to worry. We often show him pictures of places we are going to visit that he hasn’t been to before as Reuben is a very visual person. This helps him to know in advance what a place looks like and makes going away on holidays achievable.

Reuben struggles to transition from place to place, this can cause triggers, so we don’t overstimulate him by not planning too much into one day.

 

By educating his classmates on this, they can better understand Reuben and more about ASD in general.

Reuben enjoys a lot of the things other children do his age. He loves computer games and building things in Minecraft. He loves going to Cubs and participating in all the activities they do. Despite his ASD diagnosis, Reuben is a very sociable person and loves his friends. At home he can be a very loving child who shows affection to us and loves his little brother Henry, and Woody the Cockapoo. He has a great sense of humour and loves making us laugh.

 

So, if you ever see Reuben hand-flapping, or covering his ears, you can know that he’s not being badly behaved or being strange, he’s simply being overstimulated at that time, likely because of a loud noise such as a fire alarm, or heavy rain on the roof. This is Reuben's way of coping with situations such as these.

 

We are extremely pleased with, and very grateful for the support the school has put in place for Reuben and the help he gets through Mrs George and her ELSA sessions. The support and understanding of all the teaching staff has been wonderful and we feel that this has really supported us in our day-to-day family life.

 

Now that Reuben understand ASD better, and feels more comfortable with sharing his diagnosis, I hope that you can all be there to support him should he need it as he navigates his way through his school years and childhood and eventually into adulthood in a world that can sometimes feel overwhelming to him.

 

 

 

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