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Freddie's world

One of my favourite Instagram accounts to follow is @freddieboy_and_me. So as World Autism Awareness Week comes to a close, I thought I'd introduce you all to the treasure that is Freddie Bott.


Freddie and his Mum, Emma
Freddie and his Mum, Emma
"How on earth do you sum up Freddie?
He is an absolute joy. He’s such a soft, kind-hearted little person, and his quirks are just what makes him, him.
He's always been the cuddliest little boy ever."


Finding positives when you discover that life might be different for your child can’t be easy. It sounds impossible that the worry you have as the parent could be turned into something uplifting, supportive, and ultimately beautiful.


Yet my heart flutters with a little ‘hooraaaaay’ every time I see there’s a new post or story in the Instagram account @freddieboy_and_me. I know it’s going to make me feel gooey inside. And I know it’s going to remind me that, whatever I’m facing in life, I can adapt and learn and work through it.


Freddie Bott was diagnosed with autism in 2020 at 6 years old. Whilst it’s Freddie’s diagnosis, and while it means he now gets more specialised support, the reality is that for Freddie, not much has changed. He’s still the kind, gentle, funny, clever little man he always has been.


He remains happily and deliciously oblivious that not everyone loves the same things he loves. And that we don’t all teach ourselves the Russian alphabet at the age of 6. (He has made my only party trick of singing the alphabet backwards, quite frankly, shameful and redundant).


Freddie, certainly for now, doesn’t have to adapt to anything. But for his parents, Emma and Mike, there’s a steep learning curve ahead. To understand how things are for Fred now, and how things may be in the future, is sometimes daunting and overwhelming.


It was Emma’s 2 best friends, Claire and Jo, who suggested using Instagram to share Freddie’s journey and reach out to others for support.


Roll on 7 months forward, and @freddieboy_and_me is an 800 strong community hub of support, friendship, learning and camaraderie that Emma never expected to find.


Here, Emma tells us all about Freddie and the difference @freddieboy_and_me has made to her since his autism diagnosis. Then later on, Freddie tells us everything we never knew we needed to know about his favourite video game, Bugsnax!

 

Emma, thank you so much for talking to me today. The very first thing I’d love us to talk about is just who Freddie is. What’s his character, what can you tell us about Freddie Bott?

How on earth do you sum up Freddie? He is an absolute joy. He’s such a soft, kind-hearted little person, and his quirks are just what makes him, him.


He likes his own company but is also, he’s such a comfort seeker. If something isn’t right with him, he’ll appear under your arm for a cuddle. He’s always been the cuddliest little boy ever.



Were you surprised by his diagnosis?

When you look back at Freddie as a little one, now I know what I know, there were so many signs of him having autism at a very young age.


From the age of 1 he has been completely obsessed with letters and numbers. There’s a word for it. Which I actually learned through a @freddieboy_and_me follower. Hyperlexia.

These are children that are not just fascinated with letters or numbers, but have an incredible ability to latch on to things like that, they have an incredible reading ability. They will love things that have a purpose. Autistic children can really struggle with stories and fiction, because they have to link something to something solid. So they can love non-fiction. Facts. Anything that has purpose and logic behind it.

Freddie playing the video game Bugsnax
Playing Bugsnax in his solar systems PJ's!

Hyperlexia comes into things like, a fascination with countries, capitals, flags. Or makes of cars.


They’ll be able to memorise – so for Freddie, at the moment he’s obsessed with the game Bugsnax. He can tell me all 100 bugsnax in the game, but not only can he tell me them all, he can list them to me in the order that they appear in the game.



I have a sneaky suspicion I might be learning a lot about Bugsnax later on…..

Yep!


So that’s where it started, letters and numbers.


Then when he got to 2-3 years, we got to the stage of watching the same bit of the same programme over and over again. I remember there was an episode of something where they were playing with bricks, and he found it hilarious. He watched that same 30 seconds again and again and again because he found it funny. That went on for days, watching that same thing.



Right from tiny then, even before preschool! How was preschool for Freddie?

We absolutely loved his nursery, his teachers were just fantastic.


When he started there, he was into shapes. Which can be another trait of hyperlexia.


There was a set up with 3D and 2D shapes, and that would be where you would find Freddie, every single day. If he had to do something different, a set activity, they would give him a basket to put his shapes in so that he could take them with him. Because that was obviously his comfort thing, he liked to have complete routine.



And how about big school?

The first time we approached the school about our suspicions, he was in reception. We sat down with his teacher for a good half an hour and she 100% agreed with our concerns. At this point Freddie had been put in a group of 4 children that they took out of class once a week to work on emotional support.


He’s a very clever boy, he’s very capable, so there’s never been any concern with that. But they found that emotionally it was really hard for Freddie to interact with other children. To know when it was appropriate to speak out, taking turns.


Their biggest thing was Christmas time. They had up on the board their routine for the day. And Freddie knew what was coming at what point in the day, every day. He knew his routine.


At Christmas it all flipped on its head. There were Christmas parties, there were play rehearsals, and his teacher’s words to me were ‘it was painful to see how much it affected Freddie.’ He wasn’t comfortable, he wasn’t doing what he was supposed to be doing, he wasn’t sat down doing his maths work at 11am on a Tuesday. He was in the hall practising a song dressed as a sheep!


And then we went into Yr1. I love our school for the support they gave when they didn’t have to. Before he moved up, at playtime they took Freddie several times to his new classroom without other children there so he could have a look around and get a feel for it. They knew it would make a difference for Freddie. So they did it gradually for him and then did it with other children there too.



And then…covid happened. Was being at home a good thing for Fred or was the severe change in routine a problem?

He loves being at home. But it threw him into something completely unpredictable, he just stopped going to school. And for Fred ‘it’s not school holidays so why am I not going to school?’


It brought out behaviours in him that we have never seen. His predictable behaviour, he’d find an interest and he’d be latched onto that for months. But in lockdown, we’d go two days of being absolutely obsessed with a game, and then we flipped to the solar system, and then it would be a particular toy, and then it would be a particular episode. And then he was obsessed with the same 30 seconds of The Simpsons Movie!


And the meltdowns – I just couldn’t do anything for him. I just had to leave him and let him get on with it.


Actual home schooling was impossible. Absolutely impossible. We were very lucky that come May last year, they let Yr1s go back if they wanted to. Fred did and it was like we had a different child.


He had his routine, and all of a sudden he reverted back to his letters that he’d left alone for months. He’d gone back to his familiarity and things that he knew.



Is that when you decided the time was right to seek a diagnosis?

Yes. We had the opportunity to pursue a private diagnosis and his teacher said to me ‘what can I do?’


There was paperwork that needed to be filled in, and she took it. She spent so much time on it and did such a thorough job that the doctor told us he’d never seen that level of detail before.


We were with that doctor for nearly 3 hours which sounds crazy but it went so quickly. And those entire 3 hours were solely based on Freddie.


He asked us questions but he was looking at the child, not what the parents thought it might be. He was really thorough and it was very evident that he’d totally involved himself in the paperwork and this appointment.


He told us there and then that yes, he thought he has ASD. He said that while we had thought Fred ticked some boxes, he ticks all the boxes. Things that me and Mike would never have considered a trait, were. It was really eye opening.

Freddie wearing a NASA t-shirt
The boy loves all things space!

Ten days later our report arrived. In depth pages talking about our child. It was like Fred was on the page.



What difference has that made at school?

I’ve always been quite confident that he has got a really good support team behind him at school.


Now we’re in Yr2 but we’ve gone into Yr2 with a diagnosis. So I have the SENCO at school, she’s in contact with me, letting me know how he’s doing.


They’ve put things in place for him. He’s got on his desk at school his own visual timetable. At the start of every day, he’s got Velcro pieces that go on that timetable to tell him what he’s doing, at what time. He can slot all those on, and as the day goes on, he takes them off as he does that thing. It makes it much easier for him to have that structure.


So post lockdown, he’s gone back and he’s just back in his routine, he’s happy.



What does Freddie think about his diagnosis?


Fred and his big sister, Isla
Big sister cuddles are the best

"...they might fight like cat and dog, but she is his biggest protector."


I don't think Freddie has any idea. It’s not that we don’t talk to him about it, it’s not that we hide it. It’s just where his level of emotion goes. It doesn’t occur to him that others might not love or do the same stuff he does.


His older sister, she’s very much aware of it. And they might fight like cat and dog, but she will be his biggest protector.


We went away for a few days back in August last year, and outside where we were staying was a playground. The children were all out there, we could see them from where we were.

This was the time when Freddie was obsessed with the Russian alphabet. So not only was he jumping around singing the alphabet at the top of his lungs, he was doing it in Russian.


There were older kids, probably about 10/11yrs old. Now Fred will talk to anybody, but he will talk to them about what he wants to talk about. So he just waltzed up and started singing the Russian alphabet to these kids!


They called him a weirdo and Isla heard it. And was straight in there. ‘Don’t call my brother a weirdo, he just knows his Russian alphabet!’


She knows his quirks and she’s grown up with him like it.



Where did he even get the Russian alphabet from, is it something they did at school?

No it came from him browsing YouTube videos! By the time he’d watched it a few times, he could say it and he could draw the entire thing from memory. He can also do an animal for every single letter of the alphabet in Russian too!



I have never felt more inadequate….Ok, lets talk about the Instagram account. What led to you setting it up?

I decided to set up @freddieboy_and_me following the appointment and diagnosis.


It came off the back of talking to my two closest friends, Jo and Claire, about how much I felt I needed to learn and where would I get support from for me. It was more a case of doing it for me. Although it was something that was happening for Freddie and to Freddie, there was so much that I wanted to learn to.


I was feeling quite unprepared. I know my son, I know how he is now. But looking to the future and what things would mean for him, I wanted to explore the support that could be in place.


There’s lots that you can read, you can go online, all the doctors you can talk to. But talking to people that are going through it and have experience in it and just knowing that there is a community out there that we could be part of, that we can share what we’re doing and look at what other people are doing and linking those two together – that’s what I wanted to tap into.


So it was made for us to see what others are doing, but also for us to put us out there. For us it’s huge, for us it’s our everyday life and having been on there (Instagram), there’s so many people that have reached out to me in private messages to say the things I’m posting about Freddie are the same as their little boy.


Just having these – like I don’t know these people, but just these little connections.


And I like being able to show what autism means for Freddie and for us in a positive light too. There are so many positives.



Have you found then that @freddieboy_and_me, and connecting with others through it, has brought about mutual support amongst you and all the followers?

It’s eye opening how many parents are bouncing off each other. Someone will put up on a story ‘I’m getting nowhere with this’ and people will say ‘yeah we’re in the same boat.’


There’s so much togetherness over it, and encouragement to push and persist when they’re stuck in the system trying to get a diagnosis or the right support.



Is there anything that has surprised you since you set up the account?

The amount of followers that is has generated. That has massively surprised me because originally I thought this is going to be something the family are going to follow.


I thought and hoped that we might find a few people similar to us, but I never thought it would grow it has.


But we started the page in August, it’s now coming up to the end of March, and it’s just hit 800 followers! Which doesn’t sound like a lot but for us and the sense of community it gives us, it is!



What does Freddie think of @freddieboy_and_me? He interacts with it sometimes doesn’t he.

If he’s got something to say about something he particularly loves at the minute, he loves it! He loves to put out there something he has an interest with. He knows it’s there, he loves to have a little look down it and see the pictures and comments.


Generally he loves it. We were sharing his solar system advent calendar at Christmas with each fact every day. It was his thing after Mike said that they were really great facts and people would be interested. Every day ‘Mummy, don’t forget my fact today, I need to do my fact!’


And then one day he just didn’t want to do it anymore. He is VERY clear if he doesn’t want to do it. There’s no filter on Fred. You get what you get. I can’t prep him to say anything, because he’ll say something totally different. He will never do anything that he doesn’t want to do.


I think as he gets bigger there will be more input that he can offer to it.


At the minute it is more for me. To be able to look back from the point of his diagnosis and see how far we’ve come and what we’ve done and what we do now.



Will Freddie suggest posting on there or is it usually prompted by you?

I come up with the posts, because I’m sharing highs and lows and things that he wouldn’t be aware of as a high or a low.


But videos, and anything we share, like when we did book week, that was him. It was my idea to choose the stories but when we did the live reading of Poo in the Zoo, that was Fred’s idea.


I’d said ‘Fred there’s so many people who haven’t read this book’ and he said ‘well let’s read it to them!’



Have you found having the account a positive experience? Has it done for you what you wanted it to do?

Definitely. For me, it’s a scrapbook that we can always look back on. Even if it didn’t have any followers, me and Freddie can look back on it and remember when we did things.


Of course you have photos that you treasure forever, but being there and the way that we’ve posted it, there will always be context behind the photos. And he’ll always be able to access that as well.


So when he’s older and he’s more aware that he has autism and he’s more aware of what it is and what it does for him, and how it changes his life, he can always look back and see that ‘I am me and that’s ok’ and that I love him just the way he is.


Even if it’s just for that, it’s exceeded my expectations if that’s what it does for Fred.

 

At this point, Emma left for the school run and we agreed to pop back onto Zoom later and see if Freddie wanted to join us.


We had no expectations as Fred, quite heroically if you ask me, will only do what Fred wants to do. This kid has got life nailed! He’s still incredibly kind and caring and considerate to everyone around him. But he has neither fear nor hesitation in opting out when he’s not feeling it. How much easier would all our lives be if we learned how to say no?! There’s a life lesson here folks, let’s take it.


At 15:56 my phone beeped. It was Emma.


“He’s excited to chat to you! Let me know when you are ready x”


Oh Freddie Bott, you are the cutest!


Other than cutting it down slightly, I’ve barely edited the next part of this interview, because children are too hilarious and special to edit. So here you go, meet Freddie Bott, 7 years and 10 days old. Enjoy!

 

(At the starts, Freddie’s sisters have joined him. I should point out that I’ve known all 3 of them since they were born. In fact I’ve known their Mum since she was born too! But it’s an interview and Freddie is doing it properly).


Freddie: This is Isla and she’s 9.

And Phoebe’s actually 3. She thinks she had a second birthday, she’s had three.


Phoebe: Nooo, I haven’t! My second birthday is a long long time.


Freddie: It’s in August, the 18th.


Phoebe: I know Freddie. I’m gonna be, on my second birthday I’m gonna be fooooooooour. I’ll get an Elsa doll.


Emma: Right, if your name begins with I or P can you go on the trampoline or play upstairs.


(Isla and Phoebe both go out into the back garden)


Freddie: PLAY NICELY! (my heart has already melted and we’re only 10 seconds in).


Freddie: Mum said you were gonna tell me about Bugsnax by the way.


Emma: I didn’t say that. I said maybe you could talk about Bugsnax at some point.


Freddie: Oh.


Coz there’s actually two peppers in the game. Scorpenyo and Scorpepper. They’re both the same but Scorpepper’s red and Scorpenyo’s green and red at the top.


But actually one day I fed Filbo a Preying Picantis. But actually Preying Picantis splits apart. So it splits into a Cheepoof which doesn’t belong in that area.


And actually there was a little accident at school today (holds his hand up to the camera).

But before I say something about the Kwookies, if you get one or two people home that means there’s something called snackpods in five areas.


But actually meaty snackpods are really hard to find around the area, even at Frosted Peak, they’re even harder.


Did you say meaty snakpods? (If any of you have any idea what any of these words mean, I salute you. This is where Emma steps in to help me out)


Emma: It’s basically beef jerky. Every bug…


Freddie: …is a snack.


Emma: How many are there?


Freddie: ONE HUNDRED.


Emma: And the idea of the game is that…


Freddie: …you need to catch all of them.


Emma: What’s the other part of the game that’s very important? There’s all these people called The Grumpuses who live in a place called Snaxburg.


Freddie: At the end of the game, Elizabert is the Queen of Bugsnax by the way! Wiggle’s been talking about it a lot.


Emma: There’s fourteen Grumpuses and you’ve got to make sure that you get them all home to Snaxburg.


Freddie: Yep! Now can I say something about the kwookies and then we’ll start our interview.


It’s like with the Grumpuses, if you get them home you have to interview them.


So about the kwookies, there’s three different types. The first one is actually called a kwookie and it’s an oreo. You have to trip them somehow. TRIP SHOT!


And next up is Chippy which is at the Frosted Peak. There’s two areas you can find it. On the wall and running around.


The cheeser is cheese and crackers! There’s only 1 cheeser and it goes all around the area, which is in Sizzling Sands. That’s hard running isn’t it?!


Besides, all the snakpods are different. Twisty snakpod, crispy snakpod, grumpy snakpod, fruity snakpod. And the rest are diff-er-ent. Puffy snakpod, meaty snakpod, nutty snakpod, melty snakpod.


Melty snakpod! What’s that?!

Freddie: So the reason why it’s called Frosted Peak, if you stand there it means the temperature keeps it from melting.


Emma: Oh it’s ice cream. You find it in the frozen bit don’t you.


Freddie: So the thing is, about it, the thing is, my favourite snakpod is actually kind of like the crispy snakpod. It’s just like blue and has crisps inside it.


What’s your favourite snakpod?


I think mine would be the melty one if that’s ice cream.

Freddie: There’s actually two ice creams. One is called the Scoopy, and the Sherbie.


Sherbie is pretty easy, you just need to lower it into the water. But Scoopy, it’s really hard.


You know I told you about Preying Contis splitting? SCOOPY’S INSIDE THE SCOOPY BANOOPY!


Emma: Scoopy Banoopy’s a banana split isn’t it.


Freddie: Yeah it’s harder. All you need to do is put a trip shot where the ice is near the Sodie.


There’s two rocks on the right over here, so all you need to do, when it’s done set it back. Make sure it’s really closed coz you don’t want it to chase the Sodie coz it can still go into the cold water.


You have to jump down on it until it’s on this side. And then the Scoopy will go along the ice. First time I missed it. But next time I caught it!


But Cheery and Banopper, they’re much easier! Cheery is just quite easy. Cheery you just need to scare it into a trap outside the bush. Wait for it and then you can catch it.


How did you learn that Fred? How did you learn how to catch them?

Freddie: Watching loads of videos.


Emma: He watches YouTube videos. If he’s not sure of something, he takes himself onto YouTube and then finds a video of how to do it. You’ve taught yourself how to do it all haven’t you.


Freddie: Besides, about the Scoopy Banoopy’s Banopper. In fact it’s even easier, the trees they look like triangles by the way, so you need to put your lunch pad and trip shot down. Just put it near the top of the tree, between the 4th and 3rd one, and then the Banopper will jump to that tree and you can capture it.


There’s actually 3 types of banoppers! Cobhopper, Red Banopper and Banopper!


Emma: Cobhoppper’s a corn on the cob, he’s not a banana.


Freddie: I know.


Phoebe (off camera): I need to go to the toilet.


(Phoebe sneaks into view…)


Phoebe: Umm I was just seeing, umm. Hello. Actually, you know, on Friday, we’re having a sleepover.


(Isla’s appeared too)


Isla: I’m writing a story.


Emma: I can send it to Lydia if you want me to.


Isla: Yeah! I’m gonna rename it. (I can confirm everyone, that I have now read Isla’s story so far and it is brilliant! Can’t wait for the next instalment!).


Emma (to I and P): Can we finish talking about what we’re talking about now.


Phoebe: Umm we can help you talk about it.


Emma: No because I won’t be able to hear with you wittering in my ear. You’ve come in to go to the toilet haven’t you?


Phoebe: I don’t need the toilet.


Freddie: Besides, let’s start our interview now.



Freddie, I love your freddieboy_and_me Instagram account that mummy set up. And I just wondered if you like it?

Freddie: Yeah I kinda like it with the Simmering Springs picture by the way.


Emma: You uploaded that onto it didn’t you.



I really liked, you know when you were opening your solar system advent calendar? I loved hearing all of those facts.

Freddie: You do know that I did not do all of it didn’t I?



And I joined your Live when you and Mummy read Poo in the Zoo. Mummy said that was your idea to share that with everybody.

Emma: You wanted to share it with everybody didn’t you?


(Laughing, Freddie falls backwards onto the sofa)


Freddie: That was a yes.


Emma: We love reading stories don’t we?


Freddie: Yeah



Do you think you might want to talk about Bugsnax on there?

Freddie: Maybe about bugsnax, and videos like Scorched Gorge and Frosted Peak by the way.


(Enter Phoebe with a homemade rocket)


Freddie: Oh jeez.


Phoebe: Look at my rocket!


Oh wow! It’s a wonderful rocket!

Phoebe: Yep. I made it at nursery. I know something cool. The Smeds and The Smooooooos.


Freddie: Phoebe can we do our interview?


Phoebe: (now off camera): Yeah. I’m gonna watch you.


Emma: Is there anything else you might like to share on your freddieboy_and_me page?


What did Alex get you for your birthday that you love? Can you remember? He got you the solar system magnets.


Freddie: OH YEAH! THOSE!


(Freddie runs off to go get them).


Emma: They’re like 3D marbles but magnets. Hello Phoebe.

Phoebe sat on Emma's lap, holding her rocket
Phoebe and her rocket, just before blast off!

Phoebe: I made my rocket. One, two, three, four, five, six, seven, blast ooooooooff!


It’s such a good rocket!


(Freddie reappears with his box of planets)


Wow!


(Freddie unboxes them and shows them to the camera).


Emma: They’re all in there. Do you want to pop one out?


Isla: (off camera): They’re really beautiful.


Freddie: I’m actually gonna show you our planet.


(Holds up the Earth magnet)

Wow!


Freddie: Hey guys. You know, there’s something different about these two (holding up two planets). This is actually Neptune. This is actually Uranus.


They’re very similar aren’t they?

Freddie: Yeah they’re both the same colour


(Freddie holds another up to the camera)


Emma: Is that the sun?


Freddie: Satuuuuuuuuuurn!


The sun’s actually boiling hot (holds up the sun). Besides, let’s carry on with our interview.



Freddie, when mummy posts things in freddieboy_and_me, do you look at the pictures that she posts and the things people write to you on there?

Freddie: Every time I try to go on that phone.


Emma: We always talk about what people say on there don’t we.


Freddie: Yeah.


Emma: And, what happened on your birthday?


Freddie: DADDYCAKE LEGS! (daddycake legs, I learn, is another bugsnax. Obviously).

A birthday cake of Daddycake Legs. 3 tiers for his body, 2 eyes on the top and middle layer. White icing on the body. Then 2 red, 2 green, 2 yellow and 2 blue legs made from icing.
Daddycake Legs! Made by Auntie Zosia

Emma: Yes you got a daddycake legs. But there’s a young man who’s got his own account on Instagram who follows your page, and he asked to send you a birthday card didn’t he?


Freddie: Oh that’s so sweet of him!


Do you know I actually watch True a lot and I am really obsessed with the wishes.


Emma: Yes that’s your favourite programme at the moment isn’t it, True and the Wishing Tree.


Freddie: Let’s finish our interview now.



Alright, thanks so much for talking to me!

Emma: It’s been lovely talking hasn’t it!


Phoebe: Can I talk one second? I think, you know, something’s weird. On my tablet, my dad can’t get YouTube on my tablet coz he can’t try to get YouTube on my tablet.



Fred talking to Phoebe
The negotiation!

Freddie: Phoebe can I ask you something?


Phoebe: Yep.


Freddie: If I watch True right now, then I’ll let you watch True and I’ll play Bugsnax. Deal?


Phoebe: Yep

Fred and Phoebe shaking hands
Deal made!

(They shook on it! A 7yr old and a 3yr old made a deal AND SHOOK ON IT!).


Phoebe: My dad probably knows how to get Netflix and BBC iPlayer on my tablet. But he can’t get YouTube on my tablet right now.


Emma: Pheebs, my name’s Hermione Granger. And you are?


Phoebe: Ron Weasley.

 

I mean, what can I add to that?


Thank you all for learning about Freddie with me. Let’s continue to raise awareness about autism together and just how much brighter our lives are for having souls like Freddie in the world.

"There's so much togetherness", Emma Bott

Lyds out x


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