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Hi, my name is Jordan. I am a special education teacher from the UK. I share my passion for

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everything communication, sensory regulation and fun lesson ideas for my classroom of disabled

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pupils aged 4 to 11. Each week I am joined by experts in the field answering your questions

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and sharing our knowledge and experience working alongside our beautiful young people. Let's get started.

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Hello everybody and welcome back to another week. Today I am going to be joined with

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Michelle from Arfyd Life UK and she is a mum of a boy with Arfyd which is an eating disorder.

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And today I want to talk all about Arfyd and the impact it has obviously on the family and the

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child but also how we can best support as a staff team as well. This year in September,

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new to me, we have had a people diagnosed with Arfyd but actually watching him and learning more

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about it since we've had him in my class I'm realising actually I have had lots of other

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children throughout my teaching of 15 years with similar traits and similar relationships with food

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really. So now I'm just wondering did they have Arfyd as well and they were just pre-diagnosis.

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So I'm sure there's a lot of children out there especially if you work with autistic children

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or have autistic children. It's far more common or maybe even exclusive to autism is a question I

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want to ask. So yeah I'm going to get Michelle on now and we can ask her all of the questions.

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Hello Michelle. First of all thank you so much for having your account. It's been really really

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useful to me as a teacher newly to this Arfyd world. And thank you for having me. I feel very

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grateful to have a little chat tonight. Of course. So let's start from the beginning

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because I'm sure you haven't been Arfyd mum forever. No. Talk about your journey

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before and then maybe what it looked like. Into now. To this Arfyd world. Yeah so I've got two

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children. My eldest doesn't have Arfyd, it's my youngest. So we had a lot of issues with her when

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she was younger. She's got like a rare bone disease. Had always kind of heavily masked but

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we never really knew what. And actually it's turned out that she was actually masking her autism.

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So and since kind of her growing up we've seen her sensory side come out. But actually with Arlo

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when he was born he was quite poorly at birth. He had chicken pox at three weeks old and then

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shingles at four months. So he had quite a rough start. And then from that like whenever we laid

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him down his hands would really flick up and we was a bit like oh what's all this? You know they

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wondered was it epilepsy? And then as the time went on they was like this could be sensory.

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We was like okay. It was kind of like his just reaction to laying down. He hated having his hair

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washed. Just everything. Everything sensory related as a baby. He hated it. Absolutely hated it. So

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then as we started weaning, obviously being the second child we kind of had all the books read

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of all that. Everything that you do you know and go down that road of weaning. So we started purees.

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Loved anything soft. Anything cold. Wasn't a fan of hot textures. And then as soon as we hit the

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lumps, the bumps, the textures it just stopped. And we was a bit like okay let's just see what

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happens. You know we carried on trying. Carried on persevering. Then started questioning myself

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is it me? What am I doing? Have I given up? You know am I not giving him enough options of maybe

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like puree as opposed to finger foods? Like you know what's going on? And as time went on it was

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more obvious that he was having that typical beige diet. You know lived off of potato waffles. He

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would suck them to every ounce of their life until they swallow. He could swallow it. You know loved

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skips, custard creams. Anything that was just easily edible that didn't take much effort.

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Yeah. And it was all very kind of you could see the sensory side was there. So we kind of went

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down that road first. No one ever mentioned autism. Everyone had said to me he's not autistic. It's

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obviously just he's got sensory processing. So it was like fine. You know we started to look into it.

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It was under a pediatrician anyway. It felt like being poorly at birth. So we brought it up with them.

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And they was like well let's get you under a dietician. We'll see what they say.

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And this was when we was hit with which I'm sure a lot of people are going to agree. The fussy eating.

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We said the fussy eater it's a stage. It's neophobia. You know it's a part of growing because

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he was maybe two and a half three by this point. Still not in maybe no more than 10 foods.

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All the same thing like biscuits. Just anything that was soft. So it got to the point that I was

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a bit like no this isn't this isn't right. This isn't my fussy child. You know I knew something

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wasn't. I knew in my heart there was more. Well not unfortunately. We moved house and it actually

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got us discharged from care. Which we had no clue. We didn't know it would happen. We kind of just

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went along to the next dietician appointment and they was like we've got to discharge you.

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And I was like well now what? What do you mean you're going to discharge me? So it kind of.

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But at that appointment the dietician did say he was like if I see you in 10 years time

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it wouldn't be surprised if he told me it was aphid. And I was like what's that?

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Was aphid. So then it kind of got that little light bulb in my head thinking

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hang on I don't know what this is. So I went on my little research detective journey which I quite

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enjoy and yeah looked quite deep into aphid and thought boy he actually meets the criteria.

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You know his blood work wasn't great. He's low in iron. All his hemoglobin was really up and down.

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His platelet count. Everything just was all over the place and I was a bit like hang on a minute

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all the flags and all the boxes are being ticked. What do I do? What do I do now? And because we

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was in between systems and in between areas, bearing in mind even though it was only three

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miles away where we are now there isn't no services. So I was a bit like okay we'll have

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to pay prior to that which we did and he was diagnosed with aphid but even then I was just

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like I still don't know what this is. Like yeah you can read so much but I think actually until

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you're living it and you're seeing it in person it's really hard to explain to someone that doesn't

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understand. Yeah and I'm hoping that's what this live is going to be about because I haven't ever

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heard of it before like the last couple of years. Looking back now I've seen the people that's in my

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class now. I thought that's 100% like literally a bunch of rich tea biscuits and nuggets or sausage

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rolls or you know whatever it is. And I'm so limited and when something changes like the packet,

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the smell, the logo, whatever it is. Oh the plastic one sitting next to them is a huge problem and even

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respiratory changes. Yeah exactly and it happens often doesn't it? Living in this world of eating

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disorders and aphid and autism because there's so much overlap there isn't there? There is a huge

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overlap and I think... Is it true that they don't diagnose aphid unless you're diagnosed autistic

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first? So it's interesting you say that. So we obviously paid privately for his aphid diagnosis

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because I was just like if I can get a diagnosis before we see a paediatrician I've got an answer

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on paper. So actually we got the aphid diagnosis first and then we started to test Walters with

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like private therapy trying any outlet possible to get help. Well it was only when they started

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to say to me you need to have him assessed for autism and I was like I think he is but everyone

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else around me is saying no and then May this year he was diagnosed autistic so actually his was the

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other way around. Was your daughter already diagnosed with autism before they said no? No actually so she

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she's had lifelong hip problems which is a whole other new ball game we have a very kind of polar

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opposite children complete different issues which is really fun to navigate but actually her

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her hip problem she was actually using that as a mask to hide of autism and it wasn't until she

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went into junior school that she exploded and obviously autism in girls is very very different

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which we've now come to learn she's not diagnosed yet she's on the pathway but it's obvious it's

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there and hers was it was just being hidden but even throughout this whole process it's now come

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to light that my husband most probably would have had aphid as a child and there's a chance he's got

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autism or ADHD. It opens up a whole can of worms. Yeah it does though doesn't it and I think the more

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people speak to especially parents it takes one diagnosis in your family often with the little one

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yeah and all of a sudden it's like hang on and that's what happened with my daughter

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yeah yeah she sat here one day and I was like oh my god I think she's autistic yeah my husband was

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like from I said she's masked it she's a fantastic master like master she could win an Oscar at school

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they would have no clue and I was just like I can't work out what it is and then all of a sudden I

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was just like wow now I understand but she's not got aphid you know she's just a very selective

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eater she will eat things if it's slightly different if the packaging is different she will eat it.

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What is the difference then because that's really it is more that such a great insight into that because

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autism eating I mean typically uh people that um autistic people yeah are more predict like they

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like predictability they like routine it's more rigid because that reduces anxiety and that

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obviously comes on with everything including food so typically they would stick to their favourite

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foods or they would yeah but how what's the difference between that and aphid because there

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is a difference isn't there yeah and I think with us like we are at the extreme end of the scale

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with aphid you know we have zero food Arlo literally drinks milk with his pediatric supplement

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shakes in it he doesn't eat anything that's edible basically he's on a liquid diet but I think it is

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kind it goes hand in hand it's like their growth it's more their blood I know the dsm5 obviously

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was 2013 which I do think over time it most probably will get updated because I suppose as

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time goes on they're learning more about it but I think a lot of it is it's more of the extreme like

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you know some autistic you know like having autism being a selective eater they may eat a different

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crisp potentially or they might show interest in that whereas Arlo has no interest in food

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whatsoever he keeps telling me that I'm strange because I'm eating you know it's odd it's like

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his brain's just not geared in the right way to want to eat food like he has got a massive

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trauma you know he had tonsillitis and blamed a wafer for the pain which triggered the first

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response to losing a lot of food and then he had his appendix out this just july just gone

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and that completely lost his yogurts hence what we're just down to milk so he's very trauma based

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the sensory does play a part of his like he hates textures hates saline hates anything that's wet

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so he's always been avoidant of that but his is a lot of the trauma and I think that's the

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issue we've got we can't get his trauma help I suppose being five because he's so young but

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I actually think if we could focus on that he may may eat something one day if he can just get over

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that fear of following yeah that does make sense we're obviously not a medical professional now

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but now that you're wanting to focus on the possible cause rather than yeah yeah and that's

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what I was saying to someone the other day it's kind of like you need to dissect how their aphid

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presents I think you know you're very very lucky if you can find support from a professional

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because there isn't any like it's really hard and you know I've done a couple of courses just as a

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parent because I just think well if I can have a little bit more knowledge it will help me understand

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Arlo and I think since delving into like what he likes even just sensory wise I can then focus on

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those strengths that he has got to incorporate the food into it so that he can feel more happy

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about being around food in general I've got no pressure from him eating I've got no expectations

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of him eating at all because I know it's not going to happen but if I can get him to sit up the table

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with me while I'm eating my dinner or we could go out for a meal and he's not gagging to me that's

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a huge win and all that you know it's these things that no one really understands absolutely

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must affect every aspect of your life food is so social typically isn't it yeah yeah and let's say

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going out to I mean going out for a meal I can imagine food for impossible even just going out

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for the day you'd have to really think about food wouldn't you it's a really crucial pillar

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as part of your day I think you become very good at planning I think you don't realise how much

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planning goes into it we went to Chesentown a couple of weeks ago in the theme park and by the

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time we got to the Saturday my mum went you have thought of absolutely everything I said yeah that's

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what I've got two pack school I had you know fidgets sensory toys tablets I had everything going

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knowing that if we'd hit any boundary of him feeling uncomfortable I had a solution

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because I thought he can't go all day without eating and it is a massive part like Jo's just

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put in the comment it affects everything and no one realises you know every aspect even just going

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food shopping you have to be very wary is it busy everything you know Arlo at the Maynard loves the

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smell of bread so as long as I go head in a supermarket and head to the bread aisle first

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and he has a little sniff he's fine it's like it calms him down and then he's happy being in

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the supermarket it's like you have to plan you have to plan everything yeah and and the facts

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that you want to learn more about it makes so much sense to me yeah because it's a way of getting

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control over an uncontrollable situation as well isn't it exactly it is yeah I kind of feel yeah

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and it's acceptance I think you've just it took me a really really long time to accept this is the

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journey that we're on and I think once I'd accepted that I think as a family we all seem a lot calmer

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and you know he's only recently maybe for the last six weeks he now sits up the table with us

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but he's only done that because of his sister and you know and it's because I think we've all and

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even she used to not annoy him but you know she's eight she's going to say stuff to him about eating

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because she doesn't understand herself but she's got that little bit older that she's realised that

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if she works with me and we work together we're seeing tiny little positives and they're actually

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coming from her not me you know she's the reason why he's set up the table has got nothing to do

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with me and you know we went out to the harvest for dinner the other day and we drive past it

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every day to school and he said can we go there for dinner and I was like of course we can go

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there for dinner he's looking away but I think they've got but they've got a beautiful Christmas

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tree that's lit up outside and he wanted to go and look at it but we managed to get in there

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and we ate dinner so it's funny how and it is huge I was just shocked I was like what do you mean

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you want to go there for dinner so quick the table in 10 minutes yes go now we're going now that's

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amazing that is massive isn't it and it's and I think they're the things I think a lot of families

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and I get it I did it I think you focus on the wanting them to eat you focus on the I want you

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to eat this biscuit I want you to eat this pack of crisps I want you to drink this drink whereas

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I've gone for the focus of actually I want him to be happy I want to focus on him as a person

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yes Arvid is here and it's in our life but there's a great little kid in there that in his own time

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will be ready to move forward and I think that's the only bit of advice I can give to anyone except

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this is amazing I feel like a mother and a father must be it must be a constant battle of knowing

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of course you want them to be happy of course yeah of course you know that um the more demand

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you put on them the harder it's going to be of course you know that but also the other half of

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you might just be battling with that of I need you to be okay I need you to be safe I need to be

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healthy yeah I want you to join social things it's it's such a big loss in your life and and

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those two must be constantly at battle with each other and you know and this is the worst time of

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year it's Christmas everyone's talking about going around someone's for Christmas dinner or they're

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going out for Christmas meals or they're taking their kids to have breakfast with Santa and it's

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like I can't do that and actually it breaks my heart more I can't do it with my daughter because

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if I take her he's like well why aren't I going or if we go it's just not the situation he's going

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to want to be in and I think mix that with his autism he's very structured he's very in certain

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ways we have to really plan even just for that aspect of it even just for his autism so I think

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we have to really be careful where we go and what we're doing because of not even just his eating

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it's you know just the whole bubble itself you just want them to be happy you just want to feed

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your child don't get me wrong I cried yesterday all of us have these moments where you just break

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down and it could be over the most simplest of things that could trigger you and I've had that

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you know I went out when did we go I think it was in half term with bowling with friends and they

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were like oh we'll have some we'll have something to eat and they all did a sharing platter there

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was her and her two kids and there was me and Millie and all I had is milk and I burst into

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tears because I can't order a sharing platter to share it with my kids well I could share it with

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Millie but I can't share it with Arlo and it broke my heart and I'd never and I just thought god

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where's that come from and it come out of nowhere it just this emotion comes flooding and I couldn't

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stop it in the middle of bowling and I felt blinded why has that been so triggering and I think it's

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just because you see other families doing things that's so normal yeah I'm not saying we don't

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live a normal life to us this is normal and you know what I wouldn't change it for anything

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I like it yeah it's normal you you get lost in the fact that it's normal you become blind to it

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and when people come around and they're like how do you manage I'm like I don't know how I manage

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I'll just get on with it yeah someone said but also he was still sitting at the table at bowling

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too that is huge and that is so exactly that's a win isn't it yeah and it all happens at once

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you're sad you're proud for another and it's all yeah yeah and I think that's it you you have that

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real pull on your heart streak moment you think god I'm so proud of you for sitting up the table

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and actually that first time he did set up the table when he comes up with Millie I cried and

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sobbed at the table and my husband was out because he works quite a lot and my daughter was like

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man what's wrong and I was and I explained it to her because she's quite anxious and she does worry

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a lot and she worries about me quite a lot lesser and I just said to her look you've done such an

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incredible thing I was like I'm so proud of you for getting him up the table I said but I'm so

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heartbroken that he's not eating and I just could not stop crying and you know when you ugly cry

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it's making me even well up now I was ugly crying at the table because I was just like

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me this is just so wonderful but it's just so sad it's just hard so so hard yeah because even the

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wins are met with such like loss and I think yeah and I think that was it I was so proud of him but

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then the reality sat in we can't have a family meal I can't cook him dinner can't cook him

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breakfast can't cook him anything to be honest it's kind of you start to think of them things

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you know just the standard things that you do in life or what you say is like a social everything's

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food isn't it everything's food related everything's social everything's wherever you go there is food

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it's food involved in some situation yeah so it is really hard to kind of but he's coping really

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well I think he's learning to cope and I've only noticed that the last few weeks even today we had

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a pediatrician appointment this morning to have like his weight and stuff checked and even the

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doctor said he was like he's like a different child and how he's coping and I was like I know

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I said it's like he's just realizing that this is just what happens he goes and has his height

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right and his weight checked and he gets blood pressure taken and he gets poked and prodded

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he just I think he's just getting used to it and I don't think a kid at five should have to get

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used to it to be honest I'm grateful because that's great that he's accepting it and that he's not

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relaxed less anxious about something that obviously has to happen to keep him safe but also you're

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absolutely right that no five-year-old should have to do that no and I think it is yeah it's checking that he's

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okay you know even being as poorly as he was in July he lost a hell of a lot of weight and he's put

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it back on and somehow gone back to the same cento that he was back in June so his body is managing

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and I think that's most probably the most important things to us at the minute as long as he's

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managing internally and everything's where it should be then we can just roll with it every day

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take every day as it comes and just hope he doesn't catch any germs from school that must be so

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encouraging that he yeah is on the right weight trap yeah I was quite worried to be honest he lost

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two kilos in a week when he has appendix out and he was the skin and bone it was horrible he was

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really really poorly and I think God the fact that we've managed to get that back and a kilo

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is quite impressive to be honest so I was quite shocked and quite relieved because I thought God

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if he's not put this weight back on obviously the shakes that he's now drinking as well aren't

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working but they're obviously doing something which is you know great at least I can feel I

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can feel calm about that now yeah definitely and even that it must have been anxiety broken over

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what does it taste like what's the texture of the shake you know yeah so did you have to like

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go gradually and build it up yeah so what happened was when he came out of surgery I think

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where obviously it's all the taste isn't it everything just gets flipped I think from the

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tubing and everything his breath smelt with strawberries it was just you could smell the

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drugs and I thought you're not going to eat these yogurts and we really struggled to even get him

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to drink the milk at first and I was just a bit like how can I have a really tough loving

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conversation with a five-year-old that you need to drink this because we was going to end up

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having an NG tube and as much as he's five I was a bit lucky you may understand you may not and

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obviously it was a really scary situation to be in and the dietitian originally wasn't going to

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come and see him but you know the parent actually came for your child I wasn't going to leave so she

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come and saw him and they gave us literally a five-day window to get him to drink them and I was just

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like we're going to have to have a tough loving conversation I know we shouldn't be doing no

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pressure but unfortunately in a situation like that I was like we've got to go with this and I know

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everyone says you shouldn't mix things in their milk but we had no choice there is no way like

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his dad yeah we had no choice it was either he drank them or he was going to have a tube and I

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had said that to him and I kind of we was explaining it and I said to him you know do you want to have

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a tube you know there's all these different options but if we have some of this drink mixed

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in your milk gradually over time you won't have to have that and bless his heart which is a huge

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thing anyway he accepted it I don't know how I don't know whether he could see the fear in my face

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I don't know but he now he drinks a hell of a lot of milk in a day he most probably drinks two pints

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of milk that's all that keeps him going so all I do is he's mixed the tiniest amount of his

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pedicure in with every bottle of milk and it slightly altered the change of the flavouring

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but not massively you can taste it in there but it's not overpowering so I think that's most

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probably how we worked it yeah I think if he hadn't have drunk that we would be in a completely

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different situation right now so I am very grateful I'm really grateful that bless his heart he put

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on his big boy pants and we worked at it you know even after the five days they said look you know

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keep going it's obviously he's gonna accept it and thankfully he has we've got different flavours but

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he ain't gonna touch them yeah that's what we're quite even worried is he at school he is at school

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yeah he's in year one okay and how are the school being supportive of this I assume and how is that

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environment with his drinks and um we've been really fortunate I think when he was in reception

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he really struggled I think he struggled more with like the sensory overwhelm I think reception's

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quite chaotic isn't it there's no structure so that's when we kind of really noticed his autism

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because I was like why is he having these meltdowns coming out of school like he was unbearable

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so then at that point obviously he was having the yogurts and school was supplying them for us and

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then obviously over the six weeks holidays on the summer holidays he lost them so when we before

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we went back I had a meeting with him and just said look this is the situation we're now down to

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milk so I just send him in with two bottles of milk with his shakes already mixed in it and he

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has them as and when he asks for it and touched with everything he's fine with that you know he

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does go in the lunch hall if he wants to but he has also got an option of one of the teachers has

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kindly on her lunch break if he wants to we'll play umo with him because he loves playing umo

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so he's managed a little umo club. It's not just him not eating is it there's pressure around for

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where does he go when the other kids are eating exactly about topics and conversations around

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food you want to know yeah and the whole healthy eating school yeah they need to scrap healthy

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eating in schools it drives me insane I have been part of a research thing to try and scrap it but

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it's obviously going to take a very very long time for it to get passed but hopefully it's coming

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but I think that's the problem in schools isn't it it's I get they want children to eat healthily

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but they also have to remember that all food is good food right there's kids that can't eat there

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is children that are peg-fed for whatever reason it might not be because of our food it could be

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for another condition I think they do need to reframe how food is in schools yeah and I completely

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agree with you I have to say and we don't do it in our class we don't eat by an order either you know

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some school send you sandwiches first and then listen and think god just just just let them eat

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working well with the parent I think that's the most important thing yeah and I think that's what

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I've got we've got a really good relationship with school and I think that's most probably the

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first thing you need isn't it if you can get a good relationship and a good understanding everything

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else then flows behind and an honest understanding as well you know yeah the parent could not have

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shame and for the school to not feel like you're going to fix everything because I think it's going

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to be very you know we want to both of us I suppose both parties yeah want to exactly come from both

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things you don't know and I think a lot of people assume that because your kids start school they're

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going to eat because their friends are you know so many people said that to me oh when he starts

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school he'll sit in the lunch hall when he'll eat lunch and I was like well he isn't well you know

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it's still not worked yeah so I think you know and it must be hard from your part because you know you

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think god it's so it's when you don't fully understand isn't it and you just think god

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what can we do to help and it's so it's hard in so many different angles isn't it you know even

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school he was doing they was learning about their senses actually and she'd come out and she was

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oh we've been smelling I think it was an apple or something and she was like oh he's been smelling

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it but he wouldn't taste it and I was like obviously not but I was like at least he touched it and he

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smelled it and he was quite happy to tell me and I just said to him you know don't take him away

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from the situation because I don't want him to feel secluded because he is still very young

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but at the same time do not pressure him to do it if he says no that's it the answer is no if he

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doesn't want to go in the lunch hall you go and find the teacher that wants to play you know

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just go with his lead like don't try anything with him because it's just I think you have to go by

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them isn't it it's kind of scratching the parable you actually just go by their needs it's funny

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we're kind of having the opposite problem with student diagnosed with arfid in our class I think

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he has about four or five foods but what we're noticing is whenever it's time to do work yeah

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it's when he wanders over to his back table but then you don't want to stop him no because he's

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missing right it could be something as simple as because everyone else is away occupied he feels

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safe to them be able to go in he knows probably things no one's watching me now let me go and have

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my food quickly and quietly why no one's watching I think that's exactly right but typically our

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answer would be you know work first then snack or whatever it is yeah actually it just feels so wrong

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because so we're just like all right like snack open yeah great off you go and then we get on but

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so I've done a lot of unlearning this year but it's also made me reflect on a lot of students

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that I also should have done that with just because they haven't had a diagnosis doesn't

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mean that we shouldn't also not put that demand and pressure on yeah and I think that's really

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important honestly like I'm guilty I think just because they haven't had a diagnosis wrongly

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doesn't look like they deserve the same really like even unintentionally shamed and judged the

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parenting yeah and I feel so awful about that now but looking back I definitely was like well

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they're not being strict enough they're obviously not trying it obviously lazy yeah they just need

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to try hard like yeah whatever it is I don't know what though I most probably did that I've most

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probably done that prior to having kids because we're all human right unfortunately sometimes you

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do think things isn't it and I think to this they're not understanding isn't it again it comes down

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to it you know my daughter on long days out we have to use a wheelchair because she can't walk

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that far and people just stare at her and I'm like do you want to ask her what's wrong rather

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than looking at her and making her feel really uncomfortable and they're like whoa I'm like

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yeah I'm like can you just not look at her like she's not an alien she's not a trophy on a shelf

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she's a young lady like give her some slack and it's I think people just instantly you know we've

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been sat before out for dinner and a couple were sat quite close to me and it got to the point I

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nearly had to leave because all I could hear in my ear was she's not ordering food why is he eating

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why is he whoa he's had a lot of yogurt why is he not drinking milk why is she ignoring him and I thought

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why don't you just ask me why don't you just openly say to me why are you doing that and I would have said

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because he's got an eating disorder or so just why do you need to know someone's medical information

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exactly that exactly and I think it is really and like you're saying earlier about people being not

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diagnosed everyone deserves the same whether you're diagnosed or not and I think and that's the issue

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at the minute I think there's so many people struggling to get diagnosis like we're in Essex

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and you can get a diagnosis if they're over eight but there is absolutely no support anywhere but I

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still it's not fair that you have to have a label for somebody to take you seriously you shouldn't

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have to it should be the same care whether you're diagnosed or not and it's time and that's I think

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yeah so people watching this that lots of people that come from your page have a good understanding

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or probably a life understanding because they mainly live with it but lots of people that will

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come from that are watching from my page yeah this might be the information for them and then

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they're thinking well hang on what about this people what about my child or what you know we're

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hearing that it's hard to be diagnosed okay so maybe forget diagnosis what are the best strategies

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to do if they're thinking like huh yeah what do I do the best thing to do is go to your gp but go

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equipped I found we kind of skipped the gp I think because it was already under a pediatrician and

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the health is here at the time was really good we kind of went that road rather than via the gp

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but I do find a lot of people I've spoken to it's like you want to take a food diary do it

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maybe over like a week write everything down like every food group how much they're having even down

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like to what they're refusing how they react around food any video evidence which is hard

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because I've tried doing it and it is hard because you get your phone out and they stop

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anything you can take any knowledge off of line like the charities and beaten stuff have really

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good information on our food you can take that with you and just say look my child is showing

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these signs this is their food diary you can see they're very structured to what they're having

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ask for some bloods to be taken it's hard because I think it really does depend on where you live

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unfortunately which is what I found hard way but even then I know families that are in areas that

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there is potentially help and they're actually no better off than what I am so it really does

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flit around in circles we have been he has been accepted by a complex feeding team in London but

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they won't see him till next year so I am interested to see what they say because everyone just says

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the same thing it's just you know ride it out and but yeah like josh said the gps don't know what

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off it is I think a lot of it is going equipped with even if you take the criteria for being

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diagnosed and just be like look you know they meet all of it once we check their bloods to see if

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they are deficient in anything or are they you know missing things it's just really sad because

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there's so many people out there that are struggling and it just doesn't seem to be going anywhere

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you know it doesn't there seems to be no push in trying to get and I get things need researching

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don't they like everything takes time doesn't it nothing's ever quick to change you know they

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need research and they need the data to work off but us families that are going through it now

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it's really tough really tough your instagram page have you connected with any adults with

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arford and has that been useful actually I'd say most probably the last few weeks I've had a couple

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of adults message me or like sort of older sort of like mid teens and stuff that have got off and

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it's actually been really interesting talking to them because I suppose I'm seeing it as a parent

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you know I don't have our feed so I only understand it as much as watching it on the outside but

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actually to talk to someone who is living it is actually quite interesting and it's interesting

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to see how there's maybe works differently to a child you know and I know other mums who like

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their children have had like late onset off it so they was a really good eater kind of hit school

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that kind of school-based anxiety has triggered off it so there's so many different aspects to it

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which I think makes it quite hard for the NHS and professionals to understand because every single

378
00:35:06,560 --> 00:35:14,400
person is so different it's not like one shoe of our feed fits everybody it's so different yeah and

379
00:35:14,400 --> 00:35:21,600
then it comes down to believing and trusting yeah their parent their carer yeah the person

380
00:35:21,600 --> 00:35:27,200
that's putting them forward is it comes up to trusting that doesn't it them yeah and someone's

381
00:35:27,200 --> 00:35:33,120
just parents refer to a parenting class I think and that's the hardest part about it is really

382
00:35:33,120 --> 00:35:39,280
tough like B if anyone is interested do have support classes or their support workshops but

383
00:35:39,280 --> 00:35:44,080
again it comes down to your postcode which is very frustrating but one of them is like there's I think

384
00:35:44,080 --> 00:35:49,520
when I did it there was 14 of us and it was good because you kind of see everyone else's stories

385
00:35:49,520 --> 00:35:55,200
but again it just even from coming from B which is such a huge eating sort of charity it highlighted

386
00:35:55,200 --> 00:35:59,520
that there's no help and actually a lot of I think there was four families on there that had been

387
00:35:59,520 --> 00:36:04,880
signposted from their GP to do this support group because they didn't know what else to do

388
00:36:05,760 --> 00:36:10,160
yeah it's quite a tricky situation to be in to be honest and I think that's what's scary you're

389
00:36:10,160 --> 00:36:16,080
kind of I've been around god knows how many houses and still knocking on doors and still not really

390
00:36:16,080 --> 00:36:22,880
knowing where to go but so I guess your account then is creating what you wish you had pretty

391
00:36:22,880 --> 00:36:27,440
much yeah and I just don't want people to feel alone or feel lonely like you're not alone like

392
00:36:27,440 --> 00:36:32,640
I have made so many most probably lifelong friends through having this account and being able to reach

393
00:36:32,640 --> 00:36:38,640
out to so many people that understand like the amount of times I send people you know I'd rather

394
00:36:38,640 --> 00:36:44,160
send someone I'd spoke to on here a message being like oh it's up the table because they would get

395
00:36:44,160 --> 00:36:49,360
it whereas actually one of my friends that I've known for years would be like and he's up the

396
00:36:49,360 --> 00:36:54,160
table what do you want me to do about it I don't get it whereas actually someone who's living it

397
00:36:54,160 --> 00:36:59,520
and someone who understands they celebrate that win-win with you and I do think that a community

398
00:36:59,520 --> 00:37:05,440
and building people that truly get it is important they know how big it is don't they they know how

399
00:37:05,440 --> 00:37:12,640
exactly they know how much we've gone into that step massive yeah yeah yeah Charlie said a similar

400
00:37:12,640 --> 00:37:17,200
thing um a few weeks back when talking about our fit and auditing as well she said it's just so

401
00:37:17,200 --> 00:37:22,160
lovely having a community that aren't here in the corner that you don't need to explain too much they

402
00:37:22,160 --> 00:37:26,720
just know and Charlie's just put I love our daily voice notes if anyone was to listen to our daily

403
00:37:26,720 --> 00:37:32,080
voice notes I'd think we're nuts but you do need that but it is that you know and even if it's a

404
00:37:32,080 --> 00:37:37,760
voice note crying to someone you know Charlie said to me the other day that AJ had eaten I cried I

405
00:37:37,760 --> 00:37:43,600
genuinely cried because I was just like oh my god you know and everyone's journey is so different

406
00:37:43,600 --> 00:37:49,120
but I think when they just even if they pick something up and sniff it or lick it oh my god

407
00:37:49,120 --> 00:37:56,400
like it's just it's such a heartwarming feeling and it's funny how something so small to someone

408
00:37:56,400 --> 00:38:01,360
else to you can be so huge a lot of people like yeah my kid can ride a bike I'm like oh man can

409
00:38:01,360 --> 00:38:09,600
smell bread like that's fantastic yeah you know and it's I mean as far as like disorders go um

410
00:38:09,600 --> 00:38:16,000
and anxiety goes there are so many ways can present itself isn't it yeah there's Tourette's you know

411
00:38:19,280 --> 00:38:30,160
but with food it just feels really hard because you can't avoid eating completely and be okay

412
00:38:30,160 --> 00:38:34,960
yeah and that's it isn't it and I think that's the problem I think where they have no interest in

413
00:38:34,960 --> 00:38:40,320
food it's really hard to I suppose break that barrier to get them interested in it you know

414
00:38:40,320 --> 00:38:46,320
we're quite fortunate Arlo loves cooking he loves to meal prep with me yeah which is brilliant like

415
00:38:46,320 --> 00:38:54,640
we make pizzas he makes me pizzas but he just will not eat it and that's fine but we just hope that

416
00:38:54,640 --> 00:39:01,520
over time where he's just getting more and more used to being around food that maybe one day he

417
00:39:01,520 --> 00:39:08,240
may try something but I think I've heard yeah and everyone says that you know even tonight we had a

418
00:39:08,240 --> 00:39:12,480
roast dinner randomly on a Monday and he was like what you cooking and I was like oh I'm doing the

419
00:39:12,480 --> 00:39:18,560
potatoes he was asking loads of questions and he's very intrigued by food and that's kind of

420
00:39:18,560 --> 00:39:24,320
getting more and more as he's getting older and he is interested like he says oh what you got or you

421
00:39:24,320 --> 00:39:28,960
know what we're having for dinner today and he even now comes home from school what time's dinner

422
00:39:28,960 --> 00:39:32,800
and I'm like what do you mean what time's dinner because he's now I suppose got into his routine

423
00:39:32,800 --> 00:39:38,800
that he sits with us up the table he goes and gets his tablet or he goes and makes a train track

424
00:39:38,800 --> 00:39:43,920
that then ends up around our dinner which obviously isn't very ideal whatever he doesn't matter I know

425
00:39:43,920 --> 00:39:48,640
I know literally sat and eaten dinner and a Thomas train track going around the edge with our plates

426
00:39:48,640 --> 00:39:52,080
in the middle because I just thought well at the end of the day you sat with me I don't care

427
00:39:52,640 --> 00:39:57,600
and I've even and he's delivered me like wedges and I've stuck him in the back of the carriages

428
00:39:57,600 --> 00:40:02,880
and he's been happy as Larry but he's touching it he's smelling it he's getting with that and he's

429
00:40:02,880 --> 00:40:07,360
touched it and he's to him he's just playing but actually he don't realize that he's interacting

430
00:40:07,360 --> 00:40:15,120
with that food and I think that's the key yeah it's kind of having food play as such that's not any

431
00:40:15,120 --> 00:40:20,400
time to do with mealtime you know we have got a tough tray that is designated for food play

432
00:40:20,400 --> 00:40:24,560
and he'll come home from school and he calls it his experiments he says oh what experiment can we

433
00:40:24,560 --> 00:40:30,400
do so he rummages through the cupboards finds whatever he wants and we play with it but he

434
00:40:30,400 --> 00:40:34,960
knows there's no pressure there to eat he might be driving a monster truck through bread and looking

435
00:40:34,960 --> 00:40:39,920
at the patterns or painting with yogurt on a bit of bread so you know do him whatever but he knows

436
00:40:39,920 --> 00:40:45,280
there's no pressure there but again it's good exposure yes so that's the important thing yeah

437
00:40:45,280 --> 00:40:49,920
that is something that we're trying at school we we do cooking every week and we've said which is

438
00:40:49,920 --> 00:40:56,080
brilliant one parent look don't worry about that it's going to be pressure and demand just the fact

439
00:40:56,080 --> 00:41:00,080
he's in the classroom and we're doing it is a great thing just the fact they're even in the same room

440
00:41:00,080 --> 00:41:06,720
absolutely but similarly to your son actually he's more than happy to make the thing yeah he just

441
00:41:06,720 --> 00:41:13,440
doesn't want to have any pressure or even be hinted at that he might eat it yeah and you know and

442
00:41:13,440 --> 00:41:18,800
that's his barrier yeah and that's Arlo's barrier he'll make it i'll plate it all up and i'll say

443
00:41:18,800 --> 00:41:23,040
look there's daddy's dinner and he goes daddy i made that and off he goes and i'll buy see you

444
00:41:23,040 --> 00:41:27,520
later you know he's happy he's done it he's proud he wants to tell daddy that he's made him dinner

445
00:41:27,520 --> 00:41:32,960
but that's where the level stops he's like i'm not coming back because you might ask me to eat it and

446
00:41:32,960 --> 00:41:36,480
then give him a couple of minutes and he'll come and sit with us when he realizes that daddy's

447
00:41:36,480 --> 00:41:41,440
eating it so i suppose that pressure's gone yeah in his little head so then he feels safe to sit

448
00:41:41,440 --> 00:41:49,440
with us sorry so interesting how that works isn't it yeah and it's very fascinating how he works

449
00:41:49,440 --> 00:41:54,800
obviously how he's connected the throat pain to swallowing it's kind of like my next mission is

450
00:41:54,800 --> 00:41:58,880
going to be potentially looking into how can i get this trauma out of him i ain't got no clue what

451
00:41:58,880 --> 00:42:05,360
i'm doing like motor device we're winging it but it's kind of what would be my best route of

452
00:42:05,920 --> 00:42:10,480
trying to help him just getting over that fear of swallowing i think maybe once he swallowed

453
00:42:10,480 --> 00:42:17,840
something once he may we can only hope eat but i think it's just he's got such a fear at the minute

454
00:42:17,840 --> 00:42:24,800
until we get rid of that it's hard as well isn't it because it's connected to your air pipe your

455
00:42:24,800 --> 00:42:28,400
windpipe and if you're a bit nervous about swallowing like we've all had those massive

456
00:42:28,400 --> 00:42:34,960
tablets you're a bit nervous like it doesn't go well does it and then think no and it's also

457
00:42:34,960 --> 00:42:38,960
it's like the sensory in your mouth isn't it it's like all the feels you have the food being

458
00:42:38,960 --> 00:42:43,280
over there and everywhere what if he gets stuck in his teeth you know everything's just

459
00:42:43,280 --> 00:42:49,760
just it's like once you've even you've swallowed it it's got to go down he's going to feel that

460
00:42:49,760 --> 00:42:54,160
and i think you'll most probably feel it more than anyone because nothing's been swallowed for

461
00:42:54,160 --> 00:43:00,880
yeah other than well he had yogurt for 18 months and yeah so he's not really eating anything for

462
00:43:00,880 --> 00:43:06,000
near on two years so his body we have got a dentist appointment this week so i said to my

463
00:43:06,000 --> 00:43:12,240
mum you know even he's not chewing yeah so you know does that affect his muscles in his mouth

464
00:43:12,240 --> 00:43:16,160
i think your brain just starts going into overdrive that you start thinking of everything else

465
00:43:16,160 --> 00:43:21,680
is it kind of sexy isn't it it's so unknown and the medical professionals that are typically there

466
00:43:21,680 --> 00:43:27,360
to support you don't know either i know the easily accessible one yeah and i don't think

467
00:43:27,360 --> 00:43:32,800
my dentist fully understands either you know touch with his teeth are okay like he was on really

468
00:43:32,800 --> 00:43:37,600
really strong iron medicine which unfortunately has really heavily stained his teeth but hopefully

469
00:43:37,600 --> 00:43:42,560
once they fall out and he's a new adult teeth come through they will be fine but you know i've said

470
00:43:42,560 --> 00:43:48,160
to her so many times like what effect could it potentially have on his teeth and she's just like

471
00:43:48,160 --> 00:43:54,480
don't know don't know and i'm like okay just another thing that we need to ride with hope

472
00:43:54,480 --> 00:44:00,320
these teeth survive this generation can't be the first no you have experienced this no

473
00:44:00,320 --> 00:44:08,000
no definitely not why are we still at the very beginning of learning about it's crazy isn't it

474
00:44:08,000 --> 00:44:12,480
and i think that's why i've been on such a mission to raise awareness i think just for that reason i

475
00:44:12,480 --> 00:44:20,160
think unless we all share our stories all pester people like your local mp or you know my local

476
00:44:20,160 --> 00:44:25,920
gp surgery i've got like a parent participation group and i've joined that and they actually have

477
00:44:25,920 --> 00:44:29,920
then been putting out in their newsletters about arfyd which obviously is good because then it's

478
00:44:29,920 --> 00:44:34,560
in their surgery it's been emailed out to people it's just those little things you think maybe

479
00:44:34,560 --> 00:44:39,680
someone might read that and be like what's that and then they might you know have their own little

480
00:44:39,680 --> 00:44:44,160
light bulb moment or it might bring up a conversation with someone else you know i've been to coffee

481
00:44:44,160 --> 00:44:48,000
mornings with other families more just so that i can talk to other people and you know some of

482
00:44:48,000 --> 00:44:52,640
them haven't even heard of it i think you know it's it's sad because we shouldn't actually be the

483
00:44:52,640 --> 00:44:56,960
people that are doing it i think the information should be out there already i think that's the

484
00:44:56,960 --> 00:45:03,280
problem and i don't it's like you need someone in the nhs or someone somewhere to take hold of it

485
00:45:03,280 --> 00:45:08,080
and be like right i'm going to sort this out and we will get these families the support they need

486
00:45:08,080 --> 00:45:14,720
but it's it's not that simple is it if only it was but it does take brave people like you

487
00:45:14,720 --> 00:45:20,000
because you're putting your life out there right yeah you're putting yourself on a pedestal to be

488
00:45:20,000 --> 00:45:26,880
charged and commented on but also to be supported i get that but it must be you know you're being

489
00:45:26,880 --> 00:45:31,920
really brave by doing that i think yeah and it's hard because you think you know it's your personal

490
00:45:31,920 --> 00:45:37,040
life and i'm not really that kind of person i was never the person that would sit here on a live on

491
00:45:37,040 --> 00:45:42,800
instagram it was just never me i was never that person like i danced as a kid and would dance on

492
00:45:42,800 --> 00:45:47,760
stage but i would hide in the back of the classroom at school and i would just sit quietly as much as

493
00:45:47,760 --> 00:45:53,440
i could talk for england i was never that confident person but i think when something affects a child

494
00:45:53,440 --> 00:45:58,000
so much and you can see they're not getting the support they need like my daughter's got a rare

495
00:45:58,000 --> 00:46:04,720
bone disease no one's ever even heard of that but her care i can't fault it you know her consultant

496
00:46:04,720 --> 00:46:09,440
is incredible i could send him an email and he'll reply the next day and he'll see her next week

497
00:46:09,440 --> 00:46:15,120
he's brilliant he's fantastic and i think that's my problem you need the equivalent of that and

498
00:46:15,120 --> 00:46:19,280
that's what i keep saying to him i'm like can you copy and paste yourself into the eating disorder

499
00:46:19,280 --> 00:46:24,320
world and i think that's most probably what gave me a bee in my bonnet was the fact that she's got

500
00:46:24,320 --> 00:46:30,480
such good care for something that's not very known why hasn't he got the same care when actually it

501
00:46:30,480 --> 00:46:35,600
affects him a lot more and so i think that's most probably what did it it just made me go

502
00:46:36,160 --> 00:46:41,760
i'm not having it the mp now knows who i am because i'm not going to stop until i have a

503
00:46:41,760 --> 00:46:46,960
face-to-face meeting with her and i'm not that kind of person but it's turned me into that i am

504
00:46:46,960 --> 00:46:51,520
that parent i am that parent that walks into a clinic like she's going to advocate for your

505
00:46:51,520 --> 00:46:57,840
child like you know and i think yeah and i think even it's not even that i'm just advocating for

506
00:46:57,840 --> 00:47:02,800
my own i think i've got to the point now that i'm like there's so many families that are struggling

507
00:47:02,800 --> 00:47:09,200
just like i am that maybe wouldn't have that chance to speak up or wouldn't have the confidence to

508
00:47:09,200 --> 00:47:14,720
that i'm like no i'm gonna fight for everyone i will make sure that something gets chummed because

509
00:47:14,720 --> 00:47:21,680
it's just not fair it's just my heart breaks and i actually feel more upset for other people when

510
00:47:21,680 --> 00:47:27,520
they tell me about their stories and i think god and i then forget that i'm actually leaving it too

511
00:47:27,520 --> 00:47:32,320
you're one of them yeah and i actually think it hits harder listening to other people's stories

512
00:47:32,320 --> 00:47:38,000
because i think this is just not we should all be supplied we all should have a port of call that we

513
00:47:38,000 --> 00:47:45,600
can go to or at least have some support so that we know that we can manage yeah because it is

514
00:47:45,600 --> 00:47:54,160
absolutely about life and health and it's essential it's so dangerous it is so dangerous if you get

515
00:47:54,160 --> 00:48:00,720
the wrong advice if you do slightly the wrong thing it's incredibly dangerous yeah it is and

516
00:48:00,720 --> 00:48:05,760
i think the problem is a lot of people just get hit with the whole oh it's just fussy eating do this

517
00:48:05,760 --> 00:48:10,880
you know try and get them off of being brand led get them a new brand take the pringles out of one

518
00:48:10,880 --> 00:48:15,360
tub and put the other ones in just don't tell them you can't do that with a child with arvid

519
00:48:15,360 --> 00:48:22,160
you cannot fool a child that is so particular and so strict on what they eat you can't fool them

520
00:48:22,720 --> 00:48:28,880
and actually it's dangerous because if you if you muck around with a safe food you're gonna lose it

521
00:48:29,600 --> 00:48:34,560
and then actually you've not gained anything i know we have to take risks in life and i suppose

522
00:48:34,560 --> 00:48:39,120
there will come a point most probably when arlo gets older that we can only hope he wants to change

523
00:48:39,120 --> 00:48:44,480
and we are going to have to maybe push him a bit but he'll be old enough to understand that he's

524
00:48:44,480 --> 00:48:49,200
only going to change when he's ready and i think that will be a conversation we're having years to

525
00:48:49,200 --> 00:48:53,680
come i really hope when it does come to that time that you can do it with the support of a really

526
00:48:53,680 --> 00:48:59,280
good team behind and i can only hope that too and i think that's it isn't it and it's sad but i think

527
00:48:59,280 --> 00:49:05,600
we are the people that unfortunately are the research i think we are the data i actually

528
00:49:05,600 --> 00:49:11,920
think we're we're technically most probably we are the guinea pigs which is awful i don't want to be

529
00:49:11,920 --> 00:49:17,200
that i would love to have someone that understood it and i could sit there and actually have a good

530
00:49:17,200 --> 00:49:22,000
conversation and be like wow you really do get it rather than speaking to a dietitian and she goes

531
00:49:22,000 --> 00:49:28,880
just make sure he doesn't stop drinking his milk i'm like okay yeah as if you already i know that

532
00:49:29,920 --> 00:49:36,720
it's very important it's i don't know it is that is the worry it's the fact that there is just so

533
00:49:36,720 --> 00:49:43,440
many people out there you just haven't got someone that you can feel and even i've spoken to you know

534
00:49:43,440 --> 00:49:52,080
counselors or therapists and you think can i trust you to work with alo in the first place because i

535
00:49:52,080 --> 00:49:56,960
don't know if you even know what i'm talking about properly it's really hard you know and i've been

536
00:49:56,960 --> 00:50:02,640
you've got to trust them to come yeah and with the possibility they might make it work yes and i

537
00:50:02,640 --> 00:50:08,480
think because he's so young and i think we are in such we are in a very very sticky situation we

538
00:50:08,480 --> 00:50:16,000
cannot lose his milk we can't lose it and i think we've all taken a massive step back since he had

539
00:50:16,000 --> 00:50:23,040
his appendix out for that reason and i think if anyone was to enter to be able to help us i'm

540
00:50:23,040 --> 00:50:30,240
going to have to trust them with my whole literally body because we haven't got anything to lose we

541
00:50:30,240 --> 00:50:38,080
cannot lose his milk and i think we've got to be able to fully trust someone to welcome support it's

542
00:50:38,080 --> 00:50:43,040
an incredibly desperate place to be yeah it's also incredibly wonderful place to be at isn't it yeah

543
00:50:43,040 --> 00:50:48,480
and i think that's the thing i'm desperate for help but i'm also not that desperate that i'm

544
00:50:48,480 --> 00:50:53,120
actually going to jeopardize his life and i think you know what if he lives off of milk to these

545
00:50:53,120 --> 00:51:00,960
our ever old then so be it and i think if i can just get them slight little wins and little

546
00:51:00,960 --> 00:51:07,360
progresses along the way that make our life maybe socially a little bit more easier then that's what

547
00:51:07,360 --> 00:51:14,000
it's going to be yeah yeah and i think lots of parents will be listening to this and feel really

548
00:51:14,000 --> 00:51:19,520
reassured that they are doing enough because they're being out there they're being their best support

549
00:51:19,520 --> 00:51:25,440
they're being and yeah advocate for their child ultimately that is where your role stops you

550
00:51:25,440 --> 00:51:31,200
cannot control their intake and i think that's what it comes down to right yeah you can make

551
00:51:31,200 --> 00:51:38,000
it worse but you can't control making it better you just have to facilitate an environment where

552
00:51:38,000 --> 00:51:44,960
they feel as safe as possible yeah as comfortable as possible that's where your control ends yeah

553
00:51:44,960 --> 00:51:50,480
and and it is true and i think he holds that control that little bit that i haven't got is

554
00:51:50,480 --> 00:51:56,560
all on him at the end of the day the control is on to him when he shows me any inkling that

555
00:51:56,560 --> 00:52:03,520
is ready to change then we'll go with it i think at the moment we've we take every 24 hours as it

556
00:52:03,520 --> 00:52:11,600
comes no pressure get on with it i think and just hope i think and i think most probably that's why

557
00:52:11,600 --> 00:52:18,160
he's got a lot calmer i think he's most probably picked up that i've just gone on or whatever yeah

558
00:52:19,360 --> 00:52:25,920
you're fine isn't it and i do think acceptance and i and i think that's it it took me a really

559
00:52:25,920 --> 00:52:31,120
really really long time i hit rock bottom and i think dealing with two children with two completely

560
00:52:31,120 --> 00:52:37,600
different needs just got way too much and i think i popped yeah but it took me to pop to then go

561
00:52:37,600 --> 00:52:42,000
how can i support these two kids if i ain't supporting myself and i knew that i had to

562
00:52:43,120 --> 00:52:49,760
accept myself that this was our situation and this is now our family life and it has i think

563
00:52:49,760 --> 00:52:55,120
it has massively massively helped and it is acceptance is a huge part of it i think if you

564
00:52:55,120 --> 00:53:00,560
can accept it you most probably will notice the change slowly because i have i've noticed it

565
00:53:00,560 --> 00:53:06,480
it's far easier said than done isn't it oh god it is you can't choose to accept it

566
00:53:06,480 --> 00:53:12,880
no you can't and as much as i think i most probably tried to accept it for a very very long time

567
00:53:12,880 --> 00:53:19,280
i obviously didn't i didn't accept it for a very long time and it was only maybe the last nine

568
00:53:19,280 --> 00:53:24,480
months maybe that i accepted it and i reckon i fully accepted it when he had his appendix out

569
00:53:24,480 --> 00:53:31,680
because i knew that i had to do everything i can to keep this environment as low as possible

570
00:53:31,680 --> 00:53:36,880
because we can't get any worse than what we're in and i genuinely think that's what's done it i

571
00:53:36,880 --> 00:53:43,040
genuinely think we've all just gone whoa we can't risk this kid any longer then let's just roll with

572
00:53:43,040 --> 00:53:47,840
it and i genuinely think that's what's done it he has he's he's just been like a different kid

573
00:53:47,840 --> 00:53:55,520
and i do think most probably because you think you think releasing all pressure even if it's a

574
00:53:55,520 --> 00:54:01,280
subtle subconscious one would think then he'll stop trying and then he'll never do it and he'll

575
00:54:01,280 --> 00:54:06,080
stop making progress and maybe he'll stop eating that actually the opposite has happened hasn't it

576
00:54:06,080 --> 00:54:10,320
yeah the opposite has happened completely and i think that's most probably what people get scared

577
00:54:10,320 --> 00:54:14,240
of and i've got scared of it to be honest you kind of think god if i strip everything back

578
00:54:14,800 --> 00:54:20,080
and don't ask you if you're hungry like yeah i monitor when he's had his milk so obviously

579
00:54:20,080 --> 00:54:24,720
that's all he's having so i have to monitor it like especially when he's at school we find he

580
00:54:24,720 --> 00:54:28,960
has a lot when he comes home to kind of fill himself back up and then at the weekend we kind

581
00:54:28,960 --> 00:54:34,400
of gauge it how long it's been and if it has been a bit too long we do make his milk and i'll leave

582
00:54:34,400 --> 00:54:40,160
it on the sofa nine times out of ten you'll drink it so we do have to monitor but we're monitoring

583
00:54:40,160 --> 00:54:44,960
it in a way that he's completely unaware yeah yeah it's kind of like i'll just give say to my husband

584
00:54:44,960 --> 00:54:50,320
it's pressure i know it's good it could and do tell me like i'm not even gonna answer that question

585
00:54:50,320 --> 00:54:56,400
but do you wish that when you were on yogurts or whatever that you had this same ethos of

586
00:54:56,400 --> 00:55:01,760
of just release all pressure or do you not like to think like that i don't know what are your

587
00:55:01,760 --> 00:55:07,040
thoughts on that maybe i did have that but it wasn't as strong as what it is now i think most

588
00:55:07,040 --> 00:55:12,880
problems a lot of it was very he would flick between like he was just living off of strawberry

589
00:55:12,880 --> 00:55:17,760
yogurt and he might randomly one day would have like a different flavor and i'd be like oh quick

590
00:55:17,760 --> 00:55:21,760
he's gonna have more different flavors and then he'd go back to just strawberry so he kind of

591
00:55:21,760 --> 00:55:28,000
was testing the waters with different yogurts but yeah most probably nowhere near as what i feel now

592
00:55:28,000 --> 00:55:34,160
i think now i feel very solid in the fact that we just can't yeah we've got to keep Arlo happy

593
00:55:34,160 --> 00:55:40,080
and i think if he's happy then i'm happy i think that's all we can go by and it's hard

594
00:55:40,080 --> 00:55:45,360
and don't get me wrong but even yesterday i was sat on my phone looking at things that i could

595
00:55:45,360 --> 00:55:51,120
potentially do or courses that i could go on what could i train in what training can i do

596
00:55:51,120 --> 00:55:58,000
to help him which is bonkers i mean it doesn't mean that you can't keep striving for a healthier

597
00:55:58,000 --> 00:56:05,520
happier child except that means accepting the situation you are in but also not accepting

598
00:56:05,520 --> 00:56:10,720
like you're accepting him but you're not accepting the lack of support you're not accepting education

599
00:56:10,720 --> 00:56:16,640
from the dps you're not accepting the lack of exactly so you're accepting him yeah situation

600
00:56:16,640 --> 00:56:23,280
but it's just giving me the fire to not accept the rest all you can do is try your best and

601
00:56:27,600 --> 00:56:31,920
yeah go with what's in front of you at the moment you know i think that's all you can do but yeah

602
00:56:31,920 --> 00:56:36,160
don't give up i think you've just still if your gp is telling you that they can't help you keep

603
00:56:36,160 --> 00:56:41,840
going back i would yeah keep going back to your gp you know i only had a pediatrician appointment

604
00:56:41,840 --> 00:56:46,480
today because i moaned that you didn't have one so they booked him one i think my name must be

605
00:56:46,480 --> 00:56:51,360
like red listed of like don't ignore this woman you know my last letter from the mp she was like oh

606
00:56:51,360 --> 00:56:56,560
yeah because we my daughter won an award but the the mp was there and i had to really hold it back

607
00:56:57,120 --> 00:57:02,640
not to say something to her i was very very very professional that day but i then sent her a letter

608
00:57:02,640 --> 00:57:07,680
and she was like oh i remember you and i was like good we're on facetimes it's like a gradual it's

609
00:57:07,680 --> 00:57:15,280
a gradual thing but i think we all have just got to keep going you know you feel like a pest be a

610
00:57:15,280 --> 00:57:21,120
pest i think the more we advocate and i think the more we keep the conversation going i think i think

611
00:57:21,120 --> 00:57:25,360
if we all stay too much in the background they're not going to see the needs there and i think that's

612
00:57:25,360 --> 00:57:31,440
the problem there is such a need for change that i think you need to be vocal about it otherwise

613
00:57:31,440 --> 00:57:36,560
they're never going to change it and i think that's the scary part and the more of you there is it

614
00:57:36,560 --> 00:57:42,560
doesn't have to just be all on your shoulders you can be back needing it one day yeah exactly if

615
00:57:42,560 --> 00:57:47,760
you're having a bad week like i'm sure there are yeah because where your child just needs all of

616
00:57:47,760 --> 00:57:53,040
you and you have a lot of time for social media no you have to take that time away absolutely and

617
00:57:53,040 --> 00:57:59,040
you can do that because you know there's a whole army behind you that are gonna miss it for you

618
00:57:59,040 --> 00:58:05,120
that week so it's it yeah it's better shared isn't it yeah it's not like you're talking about

619
00:58:05,120 --> 00:58:11,360
something that you've overcome or something that you're in it that you did 10 years ago you know

620
00:58:11,360 --> 00:58:17,200
that you can have a resolution and you have all the answers you're very much in it yeah and i think

621
00:58:17,200 --> 00:58:23,040
and i think that's it and i think you kind of you feel like you want to give someone an answer but

622
00:58:23,040 --> 00:58:27,600
i don't have that answer because i'm actually a parent just like everyone else it's just that

623
00:58:28,240 --> 00:58:34,720
me being more aware of how our situation is and how what's worked may potentially help someone else

624
00:58:34,720 --> 00:58:40,400
but yeah i'm by all means no medical professional i'm just a mum i'm a retired now technician you

625
00:58:40,400 --> 00:58:46,720
know it's just i think sometimes you just have to keep going and with the support of other people

626
00:58:46,720 --> 00:58:51,600
around you that's more possible isn't it yeah and i think i think that's most probably the most

627
00:58:51,600 --> 00:58:57,200
important thing get everyone around you on your side the support is the most best thing you could

628
00:58:57,200 --> 00:59:02,560
ever find you know i've backed away from friends on this from this journey because i think sometimes

629
00:59:02,560 --> 00:59:09,200
if people don't want to understand i haven't got time to help them understand no and i think if

630
00:59:09,200 --> 00:59:14,560
someone wants to support me and support my family they'll accept us as we are and if they will then

631
00:59:14,560 --> 00:59:19,680
allow allow that to be continued then that's great but if they don't then unfortunately

632
00:59:19,680 --> 00:59:25,520
i haven't got the time and i don't have the time you know it's hard enough yeah it's hard enough

633
00:59:25,520 --> 00:59:30,960
even talking to people family let alone you know friends that just don't understand my life is

634
00:59:30,960 --> 00:59:36,720
heavily consumed or phone calls emails appointments missing people you know you don't get much time

635
00:59:36,720 --> 00:59:42,960
for yourself so thank you so much everybody go and follow our food life uk thank you so much guys

636
00:59:42,960 --> 01:00:10,960
and have a lovely night and thank you so much for having me bye