Hi, my name is Jordan. I am a special education teacher from the UK. I share my passion for
everything communication, sensory regulation and fun lesson ideas for my classroom of disabled
pupils aged 4 to 11. Each week I am joined by experts in the field answering your questions
and sharing our knowledge and experience working alongside our beautiful young people. Let's get started.
Hello everybody and welcome back to another week. Today I am going to be joined with
Michelle from Arfyd Life UK and she is a mum of a boy with Arfyd which is an eating disorder.
And today I want to talk all about Arfyd and the impact it has obviously on the family and the
child but also how we can best support as a staff team as well. This year in September,
new to me, we have had a people diagnosed with Arfyd but actually watching him and learning more
about it since we've had him in my class I'm realising actually I have had lots of other
children throughout my teaching of 15 years with similar traits and similar relationships with food
really. So now I'm just wondering did they have Arfyd as well and they were just pre-diagnosis.
So I'm sure there's a lot of children out there especially if you work with autistic children
or have autistic children. It's far more common or maybe even exclusive to autism is a question I
want to ask. So yeah I'm going to get Michelle on now and we can ask her all of the questions.
Hello Michelle. First of all thank you so much for having your account. It's been really really
useful to me as a teacher newly to this Arfyd world. And thank you for having me. I feel very
grateful to have a little chat tonight. Of course. So let's start from the beginning
because I'm sure you haven't been Arfyd mum forever. No. Talk about your journey
before and then maybe what it looked like. Into now. To this Arfyd world. Yeah so I've got two
children. My eldest doesn't have Arfyd, it's my youngest. So we had a lot of issues with her when
she was younger. She's got like a rare bone disease. Had always kind of heavily masked but
we never really knew what. And actually it's turned out that she was actually masking her autism.
So and since kind of her growing up we've seen her sensory side come out. But actually with Arlo
when he was born he was quite poorly at birth. He had chicken pox at three weeks old and then
shingles at four months. So he had quite a rough start. And then from that like whenever we laid
him down his hands would really flick up and we was a bit like oh what's all this? You know they
wondered was it epilepsy? And then as the time went on they was like this could be sensory.
We was like okay. It was kind of like his just reaction to laying down. He hated having his hair
washed. Just everything. Everything sensory related as a baby. He hated it. Absolutely hated it. So
then as we started weaning, obviously being the second child we kind of had all the books read
of all that. Everything that you do you know and go down that road of weaning. So we started purees.
Loved anything soft. Anything cold. Wasn't a fan of hot textures. And then as soon as we hit the
lumps, the bumps, the textures it just stopped. And we was a bit like okay let's just see what
happens. You know we carried on trying. Carried on persevering. Then started questioning myself
is it me? What am I doing? Have I given up? You know am I not giving him enough options of maybe
like puree as opposed to finger foods? Like you know what's going on? And as time went on it was
more obvious that he was having that typical beige diet. You know lived off of potato waffles. He
would suck them to every ounce of their life until they swallow. He could swallow it. You know loved
skips, custard creams. Anything that was just easily edible that didn't take much effort.
Yeah. And it was all very kind of you could see the sensory side was there. So we kind of went
down that road first. No one ever mentioned autism. Everyone had said to me he's not autistic. It's
obviously just he's got sensory processing. So it was like fine. You know we started to look into it.
It was under a pediatrician anyway. It felt like being poorly at birth. So we brought it up with them.
And they was like well let's get you under a dietician. We'll see what they say.
And this was when we was hit with which I'm sure a lot of people are going to agree. The fussy eating.
We said the fussy eater it's a stage. It's neophobia. You know it's a part of growing because
he was maybe two and a half three by this point. Still not in maybe no more than 10 foods.
All the same thing like biscuits. Just anything that was soft. So it got to the point that I was
a bit like no this isn't this isn't right. This isn't my fussy child. You know I knew something
wasn't. I knew in my heart there was more. Well not unfortunately. We moved house and it actually
got us discharged from care. Which we had no clue. We didn't know it would happen. We kind of just
went along to the next dietician appointment and they was like we've got to discharge you.
And I was like well now what? What do you mean you're going to discharge me? So it kind of.
But at that appointment the dietician did say he was like if I see you in 10 years time
it wouldn't be surprised if he told me it was aphid. And I was like what's that?
Was aphid. So then it kind of got that little light bulb in my head thinking
hang on I don't know what this is. So I went on my little research detective journey which I quite
enjoy and yeah looked quite deep into aphid and thought boy he actually meets the criteria.
You know his blood work wasn't great. He's low in iron. All his hemoglobin was really up and down.
His platelet count. Everything just was all over the place and I was a bit like hang on a minute
all the flags and all the boxes are being ticked. What do I do? What do I do now? And because we
was in between systems and in between areas, bearing in mind even though it was only three
miles away where we are now there isn't no services. So I was a bit like okay we'll have
to pay prior to that which we did and he was diagnosed with aphid but even then I was just
like I still don't know what this is. Like yeah you can read so much but I think actually until
you're living it and you're seeing it in person it's really hard to explain to someone that doesn't
understand. Yeah and I'm hoping that's what this live is going to be about because I haven't ever
heard of it before like the last couple of years. Looking back now I've seen the people that's in my
class now. I thought that's 100% like literally a bunch of rich tea biscuits and nuggets or sausage
rolls or you know whatever it is. And I'm so limited and when something changes like the packet,
the smell, the logo, whatever it is. Oh the plastic one sitting next to them is a huge problem and even
respiratory changes. Yeah exactly and it happens often doesn't it? Living in this world of eating
disorders and aphid and autism because there's so much overlap there isn't there? There is a huge
overlap and I think... Is it true that they don't diagnose aphid unless you're diagnosed autistic
first? So it's interesting you say that. So we obviously paid privately for his aphid diagnosis
because I was just like if I can get a diagnosis before we see a paediatrician I've got an answer
on paper. So actually we got the aphid diagnosis first and then we started to test Walters with
like private therapy trying any outlet possible to get help. Well it was only when they started
to say to me you need to have him assessed for autism and I was like I think he is but everyone
else around me is saying no and then May this year he was diagnosed autistic so actually his was the
other way around. Was your daughter already diagnosed with autism before they said no? No actually so she
she's had lifelong hip problems which is a whole other new ball game we have a very kind of polar
opposite children complete different issues which is really fun to navigate but actually her
her hip problem she was actually using that as a mask to hide of autism and it wasn't until she
went into junior school that she exploded and obviously autism in girls is very very different
which we've now come to learn she's not diagnosed yet she's on the pathway but it's obvious it's
there and hers was it was just being hidden but even throughout this whole process it's now come
to light that my husband most probably would have had aphid as a child and there's a chance he's got
autism or ADHD. It opens up a whole can of worms. Yeah it does though doesn't it and I think the more
people speak to especially parents it takes one diagnosis in your family often with the little one
yeah and all of a sudden it's like hang on and that's what happened with my daughter
yeah yeah she sat here one day and I was like oh my god I think she's autistic yeah my husband was
like from I said she's masked it she's a fantastic master like master she could win an Oscar at school
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
was just like wow now I understand but she's not got aphid you know she's just a very selective
eater she will eat things if it's slightly different if the packaging is different she will eat it.
What is the difference then because that's really it is more that such a great insight into that because
autism eating I mean typically uh people that um autistic people yeah are more predict like they
like predictability they like routine it's more rigid because that reduces anxiety and that
obviously comes on with everything including food so typically they would stick to their favourite
foods or they would yeah but how what's the difference between that and aphid because there
is a difference isn't there yeah and I think with us like we are at the extreme end of the scale
with aphid you know we have zero food Arlo literally drinks milk with his pediatric supplement
shakes in it he doesn't eat anything that's edible basically he's on a liquid diet but I think it is
kind it goes hand in hand it's like their growth it's more their blood I know the dsm5 obviously
was 2013 which I do think over time it most probably will get updated because I suppose as
time goes on they're learning more about it but I think a lot of it is it's more of the extreme like
you know some autistic you know like having autism being a selective eater they may eat a different
crisp potentially or they might show interest in that whereas Arlo has no interest in food
whatsoever he keeps telling me that I'm strange because I'm eating you know it's odd it's like
his brain's just not geared in the right way to want to eat food like he has got a massive
trauma you know he had tonsillitis and blamed a wafer for the pain which triggered the first
response to losing a lot of food and then he had his appendix out this just july just gone
and that completely lost his yogurts hence what we're just down to milk so he's very trauma based
the sensory does play a part of his like he hates textures hates saline hates anything that's wet
so he's always been avoidant of that but his is a lot of the trauma and I think that's the
issue we've got we can't get his trauma help I suppose being five because he's so young but
I actually think if we could focus on that he may may eat something one day if he can just get over
that fear of following yeah that does make sense we're obviously not a medical professional now
but now that you're wanting to focus on the possible cause rather than yeah yeah and that's
what I was saying to someone the other day it's kind of like you need to dissect how their aphid
presents I think you know you're very very lucky if you can find support from a professional
because there isn't any like it's really hard and you know I've done a couple of courses just as a
parent because I just think well if I can have a little bit more knowledge it will help me understand
Arlo and I think since delving into like what he likes even just sensory wise I can then focus on
those strengths that he has got to incorporate the food into it so that he can feel more happy
about being around food in general I've got no pressure from him eating I've got no expectations
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
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
a huge win and all that you know it's these things that no one really understands absolutely
must affect every aspect of your life food is so social typically isn't it yeah yeah and let's say
going out to I mean going out for a meal I can imagine food for impossible even just going out
for the day you'd have to really think about food wouldn't you it's a really crucial pillar
as part of your day I think you become very good at planning I think you don't realise how much
planning goes into it we went to Chesentown a couple of weeks ago in the theme park and by the
time we got to the Saturday my mum went you have thought of absolutely everything I said yeah that's
what I've got two pack school I had you know fidgets sensory toys tablets I had everything going
knowing that if we'd hit any boundary of him feeling uncomfortable I had a solution
because I thought he can't go all day without eating and it is a massive part like Jo's just
put in the comment it affects everything and no one realises you know every aspect even just going
food shopping you have to be very wary is it busy everything you know Arlo at the Maynard loves the
smell of bread so as long as I go head in a supermarket and head to the bread aisle first
and he has a little sniff he's fine it's like it calms him down and then he's happy being in
the supermarket it's like you have to plan you have to plan everything yeah and and the facts
that you want to learn more about it makes so much sense to me yeah because it's a way of getting
control over an uncontrollable situation as well isn't it exactly it is yeah I kind of feel yeah
and it's acceptance I think you've just it took me a really really long time to accept this is the
journey that we're on and I think once I'd accepted that I think as a family we all seem a lot calmer
and you know he's only recently maybe for the last six weeks he now sits up the table with us
but he's only done that because of his sister and you know and it's because I think we've all and
even she used to not annoy him but you know she's eight she's going to say stuff to him about eating
because she doesn't understand herself but she's got that little bit older that she's realised that
if she works with me and we work together we're seeing tiny little positives and they're actually
coming from her not me you know she's the reason why he's set up the table has got nothing to do
with me and you know we went out to the harvest for dinner the other day and we drive past it
every day to school and he said can we go there for dinner and I was like of course we can go
there for dinner he's looking away but I think they've got but they've got a beautiful Christmas
tree that's lit up outside and he wanted to go and look at it but we managed to get in there
and we ate dinner so it's funny how and it is huge I was just shocked I was like what do you mean
you want to go there for dinner so quick the table in 10 minutes yes go now we're going now that's
amazing that is massive isn't it and it's and I think they're the things I think a lot of families
and I get it I did it I think you focus on the wanting them to eat you focus on the I want you
to eat this biscuit I want you to eat this pack of crisps I want you to drink this drink whereas
I've gone for the focus of actually I want him to be happy I want to focus on him as a person
yes Arvid is here and it's in our life but there's a great little kid in there that in his own time
will be ready to move forward and I think that's the only bit of advice I can give to anyone except
this is amazing I feel like a mother and a father must be it must be a constant battle of knowing
of course you want them to be happy of course yeah of course you know that um the more demand
you put on them the harder it's going to be of course you know that but also the other half of
you might just be battling with that of I need you to be okay I need you to be safe I need to be
healthy yeah I want you to join social things it's it's such a big loss in your life and and
those two must be constantly at battle with each other and you know and this is the worst time of
year it's Christmas everyone's talking about going around someone's for Christmas dinner or they're
going out for Christmas meals or they're taking their kids to have breakfast with Santa and it's
like I can't do that and actually it breaks my heart more I can't do it with my daughter because
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
to want to be in and I think mix that with his autism he's very structured he's very in certain
ways we have to really plan even just for that aspect of it even just for his autism so I think
we have to really be careful where we go and what we're doing because of not even just his eating
it's you know just the whole bubble itself you just want them to be happy you just want to feed
your child don't get me wrong I cried yesterday all of us have these moments where you just break
down and it could be over the most simplest of things that could trigger you and I've had that
you know I went out when did we go I think it was in half term with bowling with friends and they
were like oh we'll have some we'll have something to eat and they all did a sharing platter there
was her and her two kids and there was me and Millie and all I had is milk and I burst into
tears because I can't order a sharing platter to share it with my kids well I could share it with
Millie but I can't share it with Arlo and it broke my heart and I'd never and I just thought god
where's that come from and it come out of nowhere it just this emotion comes flooding and I couldn't
stop it in the middle of bowling and I felt blinded why has that been so triggering and I think it's
just because you see other families doing things that's so normal yeah I'm not saying we don't
live a normal life to us this is normal and you know what I wouldn't change it for anything
I like it yeah it's normal you you get lost in the fact that it's normal you become blind to it
and when people come around and they're like how do you manage I'm like I don't know how I manage
I'll just get on with it yeah someone said but also he was still sitting at the table at bowling
too that is huge and that is so exactly that's a win isn't it yeah and it all happens at once
you're sad you're proud for another and it's all yeah yeah and I think that's it you you have that
real pull on your heart streak moment you think god I'm so proud of you for sitting up the table
and actually that first time he did set up the table when he comes up with Millie I cried and
sobbed at the table and my husband was out because he works quite a lot and my daughter was like
man what's wrong and I was and I explained it to her because she's quite anxious and she does worry
a lot and she worries about me quite a lot lesser and I just said to her look you've done such an
incredible thing I was like I'm so proud of you for getting him up the table I said but I'm so
heartbroken that he's not eating and I just could not stop crying and you know when you ugly cry
it's making me even well up now I was ugly crying at the table because I was just like
me this is just so wonderful but it's just so sad it's just hard so so hard yeah because even the
wins are met with such like loss and I think yeah and I think that was it I was so proud of him but
then the reality sat in we can't have a family meal I can't cook him dinner can't cook him
breakfast can't cook him anything to be honest it's kind of you start to think of them things
you know just the standard things that you do in life or what you say is like a social everything's
food isn't it everything's food related everything's social everything's wherever you go there is food
it's food involved in some situation yeah so it is really hard to kind of but he's coping really
well I think he's learning to cope and I've only noticed that the last few weeks even today we had
a pediatrician appointment this morning to have like his weight and stuff checked and even the
doctor said he was like he's like a different child and how he's coping and I was like I know
I said it's like he's just realizing that this is just what happens he goes and has his height
right and his weight checked and he gets blood pressure taken and he gets poked and prodded
he just I think he's just getting used to it and I don't think a kid at five should have to get
used to it to be honest I'm grateful because that's great that he's accepting it and that he's not
relaxed less anxious about something that obviously has to happen to keep him safe but also you're
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
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
it back on and somehow gone back to the same cento that he was back in June so his body is managing
and I think that's most probably the most important things to us at the minute as long as he's
managing internally and everything's where it should be then we can just roll with it every day
take every day as it comes and just hope he doesn't catch any germs from school that must be so
encouraging that he yeah is on the right weight trap yeah I was quite worried to be honest he lost
two kilos in a week when he has appendix out and he was the skin and bone it was horrible he was
really really poorly and I think God the fact that we've managed to get that back and a kilo
is quite impressive to be honest so I was quite shocked and quite relieved because I thought God
if he's not put this weight back on obviously the shakes that he's now drinking as well aren't
working but they're obviously doing something which is you know great at least I can feel I
can feel calm about that now yeah definitely and even that it must have been anxiety broken over
what does it taste like what's the texture of the shake you know yeah so did you have to like
go gradually and build it up yeah so what happened was when he came out of surgery I think
where obviously it's all the taste isn't it everything just gets flipped I think from the
tubing and everything his breath smelt with strawberries it was just you could smell the
drugs and I thought you're not going to eat these yogurts and we really struggled to even get him
to drink the milk at first and I was just a bit like how can I have a really tough loving
conversation with a five-year-old that you need to drink this because we was going to end up
having an NG tube and as much as he's five I was a bit lucky you may understand you may not and
obviously it was a really scary situation to be in and the dietitian originally wasn't going to
come and see him but you know the parent actually came for your child I wasn't going to leave so she
come and saw him and they gave us literally a five-day window to get him to drink them and I was just
like we're going to have to have a tough loving conversation I know we shouldn't be doing no
pressure but unfortunately in a situation like that I was like we've got to go with this and I know
everyone says you shouldn't mix things in their milk but we had no choice there is no way like
his dad yeah we had no choice it was either he drank them or he was going to have a tube and I
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
a tube you know there's all these different options but if we have some of this drink mixed
in your milk gradually over time you won't have to have that and bless his heart which is a huge
thing anyway he accepted it I don't know how I don't know whether he could see the fear in my face
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
of milk that's all that keeps him going so all I do is he's mixed the tiniest amount of his
pedicure in with every bottle of milk and it slightly altered the change of the flavouring
but not massively you can taste it in there but it's not overpowering so I think that's most
probably how we worked it yeah I think if he hadn't have drunk that we would be in a completely
different situation right now so I am very grateful I'm really grateful that bless his heart he put
on his big boy pants and we worked at it you know even after the five days they said look you know
keep going it's obviously he's gonna accept it and thankfully he has we've got different flavours but
he ain't gonna touch them yeah that's what we're quite even worried is he at school he is at school
yeah he's in year one okay and how are the school being supportive of this I assume and how is that
environment with his drinks and um we've been really fortunate I think when he was in reception
he really struggled I think he struggled more with like the sensory overwhelm I think reception's
quite chaotic isn't it there's no structure so that's when we kind of really noticed his autism
because I was like why is he having these meltdowns coming out of school like he was unbearable
so then at that point obviously he was having the yogurts and school was supplying them for us and
then obviously over the six weeks holidays on the summer holidays he lost them so when we before
we went back I had a meeting with him and just said look this is the situation we're now down to
milk so I just send him in with two bottles of milk with his shakes already mixed in it and he
has them as and when he asks for it and touched with everything he's fine with that you know he
does go in the lunch hall if he wants to but he has also got an option of one of the teachers has
kindly on her lunch break if he wants to we'll play umo with him because he loves playing umo
so he's managed a little umo club. It's not just him not eating is it there's pressure around for
where does he go when the other kids are eating exactly about topics and conversations around
food you want to know yeah and the whole healthy eating school yeah they need to scrap healthy
eating in schools it drives me insane I have been part of a research thing to try and scrap it but
it's obviously going to take a very very long time for it to get passed but hopefully it's coming
but I think that's the problem in schools isn't it it's I get they want children to eat healthily
but they also have to remember that all food is good food right there's kids that can't eat there
is children that are peg-fed for whatever reason it might not be because of our food it could be
for another condition I think they do need to reframe how food is in schools yeah and I completely
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
some school send you sandwiches first and then listen and think god just just just let them eat
working well with the parent I think that's the most important thing yeah and I think that's what
I've got we've got a really good relationship with school and I think that's most probably the
first thing you need isn't it if you can get a good relationship and a good understanding everything
else then flows behind and an honest understanding as well you know yeah the parent could not have
shame and for the school to not feel like you're going to fix everything because I think it's going
to be very you know we want to both of us I suppose both parties yeah want to exactly come from both
things you don't know and I think a lot of people assume that because your kids start school they're
going to eat because their friends are you know so many people said that to me oh when he starts
school he'll sit in the lunch hall when he'll eat lunch and I was like well he isn't well you know
it's still not worked yeah so I think you know and it must be hard from your part because you know you
think god it's so it's when you don't fully understand isn't it and you just think god
what can we do to help and it's so it's hard in so many different angles isn't it you know even
school he was doing they was learning about their senses actually and she'd come out and she was
oh we've been smelling I think it was an apple or something and she was like oh he's been smelling
it but he wouldn't taste it and I was like obviously not but I was like at least he touched it and he
smelled it and he was quite happy to tell me and I just said to him you know don't take him away
from the situation because I don't want him to feel secluded because he is still very young
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
doesn't want to go in the lunch hall you go and find the teacher that wants to play you know
just go with his lead like don't try anything with him because it's just I think you have to go by
them isn't it it's kind of scratching the parable you actually just go by their needs it's funny
we're kind of having the opposite problem with student diagnosed with arfid in our class I think
he has about four or five foods but what we're noticing is whenever it's time to do work yeah
it's when he wanders over to his back table but then you don't want to stop him no because he's
missing right it could be something as simple as because everyone else is away occupied he feels
safe to them be able to go in he knows probably things no one's watching me now let me go and have
my food quickly and quietly why no one's watching I think that's exactly right but typically our
answer would be you know work first then snack or whatever it is yeah actually it just feels so wrong
because so we're just like all right like snack open yeah great off you go and then we get on but
so I've done a lot of unlearning this year but it's also made me reflect on a lot of students
that I also should have done that with just because they haven't had a diagnosis doesn't
mean that we shouldn't also not put that demand and pressure on yeah and I think that's really
important honestly like I'm guilty I think just because they haven't had a diagnosis wrongly
doesn't look like they deserve the same really like even unintentionally shamed and judged the
parenting yeah and I feel so awful about that now but looking back I definitely was like well
they're not being strict enough they're obviously not trying it obviously lazy yeah they just need
to try hard like yeah whatever it is I don't know what though I most probably did that I've most
probably done that prior to having kids because we're all human right unfortunately sometimes you
do think things isn't it and I think to this they're not understanding isn't it again it comes down
to it you know my daughter on long days out we have to use a wheelchair because she can't walk
that far and people just stare at her and I'm like do you want to ask her what's wrong rather
than looking at her and making her feel really uncomfortable and they're like whoa I'm like
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
she's a young lady like give her some slack and it's I think people just instantly you know we've
been sat before out for dinner and a couple were sat quite close to me and it got to the point I
nearly had to leave because all I could hear in my ear was she's not ordering food why is he eating
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
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
because he's got an eating disorder or so just why do you need to know someone's medical information
exactly that exactly and I think it is really and like you're saying earlier about people being not
diagnosed everyone deserves the same whether you're diagnosed or not and I think and that's the issue
at the minute I think there's so many people struggling to get diagnosis like we're in Essex
and you can get a diagnosis if they're over eight but there is absolutely no support anywhere but I
still it's not fair that you have to have a label for somebody to take you seriously you shouldn't
have to it should be the same care whether you're diagnosed or not and it's time and that's I think
yeah so people watching this that lots of people that come from your page have a good understanding
or probably a life understanding because they mainly live with it but lots of people that will
come from that are watching from my page yeah this might be the information for them and then
they're thinking well hang on what about this people what about my child or what you know we're
hearing that it's hard to be diagnosed okay so maybe forget diagnosis what are the best strategies
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
equipped I found we kind of skipped the gp I think because it was already under a pediatrician and
the health is here at the time was really good we kind of went that road rather than via the gp
but I do find a lot of people I've spoken to it's like you want to take a food diary do it
maybe over like a week write everything down like every food group how much they're having even down
like to what they're refusing how they react around food any video evidence which is hard
because I've tried doing it and it is hard because you get your phone out and they stop
anything you can take any knowledge off of line like the charities and beaten stuff have really
good information on our food you can take that with you and just say look my child is showing
these signs this is their food diary you can see they're very structured to what they're having
ask for some bloods to be taken it's hard because I think it really does depend on where you live
unfortunately which is what I found hard way but even then I know families that are in areas that
there is potentially help and they're actually no better off than what I am so it really does
flit around in circles we have been he has been accepted by a complex feeding team in London but
they won't see him till next year so I am interested to see what they say because everyone just says
the same thing it's just you know ride it out and but yeah like josh said the gps don't know what
off it is I think a lot of it is going equipped with even if you take the criteria for being
diagnosed and just be like look you know they meet all of it once we check their bloods to see if
they are deficient in anything or are they you know missing things it's just really sad because
there's so many people out there that are struggling and it just doesn't seem to be going anywhere
you know it doesn't there seems to be no push in trying to get and I get things need researching
don't they like everything takes time doesn't it nothing's ever quick to change you know they
need research and they need the data to work off but us families that are going through it now
it's really tough really tough your instagram page have you connected with any adults with
arford and has that been useful actually I'd say most probably the last few weeks I've had a couple
of adults message me or like sort of older sort of like mid teens and stuff that have got off and
it's actually been really interesting talking to them because I suppose I'm seeing it as a parent
you know I don't have our feed so I only understand it as much as watching it on the outside but
actually to talk to someone who is living it is actually quite interesting and it's interesting
to see how there's maybe works differently to a child you know and I know other mums who like
their children have had like late onset off it so they was a really good eater kind of hit school
that kind of school-based anxiety has triggered off it so there's so many different aspects to it
which I think makes it quite hard for the NHS and professionals to understand because every single
person is so different it's not like one shoe of our feed fits everybody it's so different yeah and
then it comes down to believing and trusting yeah their parent their carer yeah the person
that's putting them forward is it comes up to trusting that doesn't it them yeah and someone's
just parents refer to a parenting class I think and that's the hardest part about it is really
tough like B if anyone is interested do have support classes or their support workshops but
again it comes down to your postcode which is very frustrating but one of them is like there's I think
when I did it there was 14 of us and it was good because you kind of see everyone else's stories
but again it just even from coming from B which is such a huge eating sort of charity it highlighted
that there's no help and actually a lot of I think there was four families on there that had been
signposted from their GP to do this support group because they didn't know what else to do
yeah it's quite a tricky situation to be in to be honest and I think that's what's scary you're
kind of I've been around god knows how many houses and still knocking on doors and still not really
knowing where to go but so I guess your account then is creating what you wish you had pretty
much yeah and I just don't want people to feel alone or feel lonely like you're not alone like
I have made so many most probably lifelong friends through having this account and being able to reach
out to so many people that understand like the amount of times I send people you know I'd rather
send someone I'd spoke to on here a message being like oh it's up the table because they would get
it whereas actually one of my friends that I've known for years would be like and he's up the
table what do you want me to do about it I don't get it whereas actually someone who's living it
and someone who understands they celebrate that win-win with you and I do think that a community
and building people that truly get it is important they know how big it is don't they they know how
exactly they know how much we've gone into that step massive yeah yeah yeah Charlie said a similar
thing um a few weeks back when talking about our fit and auditing as well she said it's just so
lovely having a community that aren't here in the corner that you don't need to explain too much they
just know and Charlie's just put I love our daily voice notes if anyone was to listen to our daily
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
voice note crying to someone you know Charlie said to me the other day that AJ had eaten I cried I
genuinely cried because I was just like oh my god you know and everyone's journey is so different
but I think when they just even if they pick something up and sniff it or lick it oh my god
like it's just it's such a heartwarming feeling and it's funny how something so small to someone
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
smell bread like that's fantastic yeah you know and it's I mean as far as like disorders go um
and anxiety goes there are so many ways can present itself isn't it yeah there's Tourette's you know
but with food it just feels really hard because you can't avoid eating completely and be okay
yeah and that's it isn't it and I think that's the problem I think where they have no interest in
food it's really hard to I suppose break that barrier to get them interested in it you know
we're quite fortunate Arlo loves cooking he loves to meal prep with me yeah which is brilliant like
we make pizzas he makes me pizzas but he just will not eat it and that's fine but we just hope that
over time where he's just getting more and more used to being around food that maybe one day he
may try something but I think I've heard yeah and everyone says that you know even tonight we had a
roast dinner randomly on a Monday and he was like what you cooking and I was like oh I'm doing the
potatoes he was asking loads of questions and he's very intrigued by food and that's kind of
getting more and more as he's getting older and he is interested like he says oh what you got or you
know what we're having for dinner today and he even now comes home from school what time's dinner
and I'm like what do you mean what time's dinner because he's now I suppose got into his routine
that he sits with us up the table he goes and gets his tablet or he goes and makes a train track
that then ends up around our dinner which obviously isn't very ideal whatever he doesn't matter I know
I know literally sat and eaten dinner and a Thomas train track going around the edge with our plates
in the middle because I just thought well at the end of the day you sat with me I don't care
and I've even and he's delivered me like wedges and I've stuck him in the back of the carriages
and he's been happy as Larry but he's touching it he's smelling it he's getting with that and he's
touched it and he's to him he's just playing but actually he don't realize that he's interacting
with that food and I think that's the key yeah it's kind of having food play as such that's not any
time to do with mealtime you know we have got a tough tray that is designated for food play
and he'll come home from school and he calls it his experiments he says oh what experiment can we
do so he rummages through the cupboards finds whatever he wants and we play with it but he
knows there's no pressure there to eat he might be driving a monster truck through bread and looking
at the patterns or painting with yogurt on a bit of bread so you know do him whatever but he knows
there's no pressure there but again it's good exposure yes so that's the important thing yeah
that is something that we're trying at school we we do cooking every week and we've said which is
brilliant one parent look don't worry about that it's going to be pressure and demand just the fact
he's in the classroom and we're doing it is a great thing just the fact they're even in the same room
absolutely but similarly to your son actually he's more than happy to make the thing yeah he just
doesn't want to have any pressure or even be hinted at that he might eat it yeah and you know and
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
look there's daddy's dinner and he goes daddy i made that and off he goes and i'll buy see you
later you know he's happy he's done it he's proud he wants to tell daddy that he's made him dinner
but that's where the level stops he's like i'm not coming back because you might ask me to eat it and
then give him a couple of minutes and he'll come and sit with us when he realizes that daddy's
eating it so i suppose that pressure's gone yeah in his little head so then he feels safe to sit
with us sorry so interesting how that works isn't it yeah and it's very fascinating how he works
obviously how he's connected the throat pain to swallowing it's kind of like my next mission is
going to be potentially looking into how can i get this trauma out of him i ain't got no clue what
i'm doing like motor device we're winging it but it's kind of what would be my best route of
trying to help him just getting over that fear of swallowing i think maybe once he swallowed
something once he may we can only hope eat but i think it's just he's got such a fear at the minute
until we get rid of that it's hard as well isn't it because it's connected to your air pipe your
windpipe and if you're a bit nervous about swallowing like we've all had those massive
tablets you're a bit nervous like it doesn't go well does it and then think no and it's also
it's like the sensory in your mouth isn't it it's like all the feels you have the food being
over there and everywhere what if he gets stuck in his teeth you know everything's just
just it's like once you've even you've swallowed it it's got to go down he's going to feel that
and i think you'll most probably feel it more than anyone because nothing's been swallowed for
yeah other than well he had yogurt for 18 months and yeah so he's not really eating anything for
near on two years so his body we have got a dentist appointment this week so i said to my
mum you know even he's not chewing yeah so you know does that affect his muscles in his mouth
i think your brain just starts going into overdrive that you start thinking of everything else
is it kind of sexy isn't it it's so unknown and the medical professionals that are typically there
to support you don't know either i know the easily accessible one yeah and i don't think
my dentist fully understands either you know touch with his teeth are okay like he was on really
really strong iron medicine which unfortunately has really heavily stained his teeth but hopefully
once they fall out and he's a new adult teeth come through they will be fine but you know i've said
to her so many times like what effect could it potentially have on his teeth and she's just like
don't know don't know and i'm like okay just another thing that we need to ride with hope
these teeth survive this generation can't be the first no you have experienced this no
no definitely not why are we still at the very beginning of learning about it's crazy isn't it
and i think that's why i've been on such a mission to raise awareness i think just for that reason i
think unless we all share our stories all pester people like your local mp or you know my local
gp surgery i've got like a parent participation group and i've joined that and they actually have
then been putting out in their newsletters about arfyd which obviously is good because then it's
in their surgery it's been emailed out to people it's just those little things you think maybe
someone might read that and be like what's that and then they might you know have their own little
light bulb moment or it might bring up a conversation with someone else you know i've been to coffee
mornings with other families more just so that i can talk to other people and you know some of
them haven't even heard of it i think you know it's it's sad because we shouldn't actually be the
people that are doing it i think the information should be out there already i think that's the
problem and i don't it's like you need someone in the nhs or someone somewhere to take hold of it
and be like right i'm going to sort this out and we will get these families the support they need
but it's it's not that simple is it if only it was but it does take brave people like you
because you're putting your life out there right yeah you're putting yourself on a pedestal to be
charged and commented on but also to be supported i get that but it must be you know you're being
really brave by doing that i think yeah and it's hard because you think you know it's your personal
life and i'm not really that kind of person i was never the person that would sit here on a live on
instagram it was just never me i was never that person like i danced as a kid and would dance on
stage but i would hide in the back of the classroom at school and i would just sit quietly as much as
i could talk for england i was never that confident person but i think when something affects a child
so much and you can see they're not getting the support they need like my daughter's got a rare
bone disease no one's ever even heard of that but her care i can't fault it you know her consultant
is incredible i could send him an email and he'll reply the next day and he'll see her next week
he's brilliant he's fantastic and i think that's my problem you need the equivalent of that and
that's what i keep saying to him i'm like can you copy and paste yourself into the eating disorder
world and i think that's most probably what gave me a bee in my bonnet was the fact that she's got
such good care for something that's not very known why hasn't he got the same care when actually it
affects him a lot more and so i think that's most probably what did it it just made me go
i'm not having it the mp now knows who i am because i'm not going to stop until i have a
face-to-face meeting with her and i'm not that kind of person but it's turned me into that i am
that parent i am that parent that walks into a clinic like she's going to advocate for your
child like you know and i think yeah and i think even it's not even that i'm just advocating for
my own i think i've got to the point now that i'm like there's so many families that are struggling
just like i am that maybe wouldn't have that chance to speak up or wouldn't have the confidence to
that i'm like no i'm gonna fight for everyone i will make sure that something gets chummed because
it's just not fair it's just my heart breaks and i actually feel more upset for other people when
they tell me about their stories and i think god and i then forget that i'm actually leaving it too
you're one of them yeah and i actually think it hits harder listening to other people's stories
because i think this is just not we should all be supplied we all should have a port of call that we
can go to or at least have some support so that we know that we can manage yeah because it is
absolutely about life and health and it's essential it's so dangerous it is so dangerous if you get
the wrong advice if you do slightly the wrong thing it's incredibly dangerous yeah it is and
i think the problem is a lot of people just get hit with the whole oh it's just fussy eating do this
you know try and get them off of being brand led get them a new brand take the pringles out of one
tub and put the other ones in just don't tell them you can't do that with a child with arvid
you cannot fool a child that is so particular and so strict on what they eat you can't fool them
and actually it's dangerous because if you if you muck around with a safe food you're gonna lose it
and then actually you've not gained anything i know we have to take risks in life and i suppose
there will come a point most probably when arlo gets older that we can only hope he wants to change
and we are going to have to maybe push him a bit but he'll be old enough to understand that he's
only going to change when he's ready and i think that will be a conversation we're having years to
come i really hope when it does come to that time that you can do it with the support of a really
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
we are the people that unfortunately are the research i think we are the data i actually
think we're we're technically most probably we are the guinea pigs which is awful i don't want to be
that i would love to have someone that understood it and i could sit there and actually have a good
conversation and be like wow you really do get it rather than speaking to a dietitian and she goes
just make sure he doesn't stop drinking his milk i'm like okay yeah as if you already i know that
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
many people out there you just haven't got someone that you can feel and even i've spoken to you know
counselors or therapists and you think can i trust you to work with alo in the first place because i
don't know if you even know what i'm talking about properly it's really hard you know and i've been
you've got to trust them to come yeah and with the possibility they might make it work yes and i
think because he's so young and i think we are in such we are in a very very sticky situation we
cannot lose his milk we can't lose it and i think we've all taken a massive step back since he had
his appendix out for that reason and i think if anyone was to enter to be able to help us i'm
going to have to trust them with my whole literally body because we haven't got anything to lose we
cannot lose his milk and i think we've got to be able to fully trust someone to welcome support it's
an incredibly desperate place to be yeah it's also incredibly wonderful place to be at isn't it yeah
and i think that's the thing i'm desperate for help but i'm also not that desperate that i'm
actually going to jeopardize his life and i think you know what if he lives off of milk to these
our ever old then so be it and i think if i can just get them slight little wins and little
progresses along the way that make our life maybe socially a little bit more easier then that's what
it's going to be yeah yeah and i think lots of parents will be listening to this and feel really
reassured that they are doing enough because they're being out there they're being their best support
they're being and yeah advocate for their child ultimately that is where your role stops you
cannot control their intake and i think that's what it comes down to right yeah you can make
it worse but you can't control making it better you just have to facilitate an environment where
they feel as safe as possible yeah as comfortable as possible that's where your control ends yeah
and and it is true and i think he holds that control that little bit that i haven't got is
all on him at the end of the day the control is on to him when he shows me any inkling that
is ready to change then we'll go with it i think at the moment we've we take every 24 hours as it
comes no pressure get on with it i think and just hope i think and i think most probably that's why
he's got a lot calmer i think he's most probably picked up that i've just gone on or whatever yeah
you're fine isn't it and i do think acceptance and i and i think that's it it took me a really
really really long time i hit rock bottom and i think dealing with two children with two completely
different needs just got way too much and i think i popped yeah but it took me to pop to then go
how can i support these two kids if i ain't supporting myself and i knew that i had to
accept myself that this was our situation and this is now our family life and it has i think
it has massively massively helped and it is acceptance is a huge part of it i think if you
can accept it you most probably will notice the change slowly because i have i've noticed it
it's far easier said than done isn't it oh god it is you can't choose to accept it
no you can't and as much as i think i most probably tried to accept it for a very very long time
i obviously didn't i didn't accept it for a very long time and it was only maybe the last nine
months maybe that i accepted it and i reckon i fully accepted it when he had his appendix out
because i knew that i had to do everything i can to keep this environment as low as possible
because we can't get any worse than what we're in and i genuinely think that's what's done it i
genuinely think we've all just gone whoa we can't risk this kid any longer then let's just roll with
it and i genuinely think that's what's done it he has he's he's just been like a different kid
and i do think most probably because you think you think releasing all pressure even if it's a
subtle subconscious one would think then he'll stop trying and then he'll never do it and he'll
stop making progress and maybe he'll stop eating that actually the opposite has happened hasn't it
yeah the opposite has happened completely and i think that's most probably what people get scared
of and i've got scared of it to be honest you kind of think god if i strip everything back
and don't ask you if you're hungry like yeah i monitor when he's had his milk so obviously
that's all he's having so i have to monitor it like especially when he's at school we find he
has a lot when he comes home to kind of fill himself back up and then at the weekend we kind
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
it on the sofa nine times out of ten you'll drink it so we do have to monitor but we're monitoring
it in a way that he's completely unaware yeah yeah it's kind of like i'll just give say to my husband
it's pressure i know it's good it could and do tell me like i'm not even gonna answer that question
but do you wish that when you were on yogurts or whatever that you had this same ethos of
of just release all pressure or do you not like to think like that i don't know what are your
thoughts on that maybe i did have that but it wasn't as strong as what it is now i think most
problems a lot of it was very he would flick between like he was just living off of strawberry
yogurt and he might randomly one day would have like a different flavor and i'd be like oh quick
he's gonna have more different flavors and then he'd go back to just strawberry so he kind of
was testing the waters with different yogurts but yeah most probably nowhere near as what i feel now
i think now i feel very solid in the fact that we just can't yeah we've got to keep Arlo happy
and i think if he's happy then i'm happy i think that's all we can go by and it's hard
and don't get me wrong but even yesterday i was sat on my phone looking at things that i could
potentially do or courses that i could go on what could i train in what training can i do
to help him which is bonkers i mean it doesn't mean that you can't keep striving for a healthier
happier child except that means accepting the situation you are in but also not accepting
like you're accepting him but you're not accepting the lack of support you're not accepting education
from the dps you're not accepting the lack of exactly so you're accepting him yeah situation
but it's just giving me the fire to not accept the rest all you can do is try your best and
yeah go with what's in front of you at the moment you know i think that's all you can do but yeah
don't give up i think you've just still if your gp is telling you that they can't help you keep
going back i would yeah keep going back to your gp you know i only had a pediatrician appointment
today because i moaned that you didn't have one so they booked him one i think my name must be
like red listed of like don't ignore this woman you know my last letter from the mp she was like oh
yeah because we my daughter won an award but the the mp was there and i had to really hold it back
not to say something to her i was very very very professional that day but i then sent her a letter
and she was like oh i remember you and i was like good we're on facetimes it's like a gradual it's
a gradual thing but i think we all have just got to keep going you know you feel like a pest be a
pest i think the more we advocate and i think the more we keep the conversation going i think i think
if we all stay too much in the background they're not going to see the needs there and i think that's
the problem there is such a need for change that i think you need to be vocal about it otherwise
they're never going to change it and i think that's the scary part and the more of you there is it
doesn't have to just be all on your shoulders you can be back needing it one day yeah exactly if
you're having a bad week like i'm sure there are yeah because where your child just needs all of
you and you have a lot of time for social media no you have to take that time away absolutely and
you can do that because you know there's a whole army behind you that are gonna miss it for you
that week so it's it yeah it's better shared isn't it yeah it's not like you're talking about
something that you've overcome or something that you're in it that you did 10 years ago you know
that you can have a resolution and you have all the answers you're very much in it yeah and i think
and i think that's it and i think you kind of you feel like you want to give someone an answer but
i don't have that answer because i'm actually a parent just like everyone else it's just that
me being more aware of how our situation is and how what's worked may potentially help someone else
but yeah i'm by all means no medical professional i'm just a mum i'm a retired now technician you
know it's just i think sometimes you just have to keep going and with the support of other people
around you that's more possible isn't it yeah and i think i think that's most probably the most
important thing get everyone around you on your side the support is the most best thing you could
ever find you know i've backed away from friends on this from this journey because i think sometimes
if people don't want to understand i haven't got time to help them understand no and i think if
someone wants to support me and support my family they'll accept us as we are and if they will then
allow allow that to be continued then that's great but if they don't then unfortunately
i haven't got the time and i don't have the time you know it's hard enough yeah it's hard enough
even talking to people family let alone you know friends that just don't understand my life is
heavily consumed or phone calls emails appointments missing people you know you don't get much time
for yourself so thank you so much everybody go and follow our food life uk thank you so much guys
and have a lovely night and thank you so much for having me bye