Our son and ARFID.

In this blog post I talk about Bass's eating issues and ARFID, which stands for Avoidant Restrictive Food Intake Disorder.
This is an area of Bass's life that we have found really stressful and difficult and hard to manage and it's where we have probably felt our parenting has been most judged.
Please watch my video by joining the Facebook Group here but I've also summarised by chat for you below.  I really hope it will help you feel less lonely if you are going through something similar or just simply help raise awareness. 

A little summary of my chat about Bass's food issues: 

Bass will starve himself, it is as simple as that.
It's quite frightening if you think about that for too long.  We have a child if pushed will starve himself.  Bass got diagnosed with ARFID when he was 6 years old.  ARFID is characterised by a pattern of eating that avoids certain foods or food groups entirely and/or is restricted in quantity (eating small amounts) and it is so much more than fussy or picky eating. 
I've had four children and I know a fussy eater when I see one - my other children are fussy eaters at times, often complain about my cooking (obvs!) but they'll try it and eventually come round to eating it.  Bass, with ARFID, will not.  The difference between his fussy eating and their fussy eating is that Bass will starve himself.  Let me put it even more simply.  Bass will not eat anything he doesn't want to eat.  Full stop.  End of story.  Bass will not be persuaded AT AL…and yes, even if he is going to starve.
This simple sentence: ‘Bass will not eat anything he doesn’t want to eat.' …has been difficult for us to understand over the years.  Everyone, including ourselves, have thought we could master it!
ARFID unlike other eating disorders like anorexia and bulimia doesn't affect beliefs about your body.  Bass doesn't care if he's skinny or fat or anything, he merely has a massive fear and anxiety around food driven by sensory sensitivities.  He is extremely sensitive to taste, texture and appearance.  Bass will analyse every single mouthful he puts in his mouth.
ARFID is much more likely to develop in autistic children and out of all of Bass's autistic traits it is his major one.
So with that said, when did we start to think we had a problem on our hands?
To put simply, when Waitrose one day ran out of The Little Dishes Spaghetti Bolognese ready meals.  Bass had got so dependent on these - this certain type of meal, the taste, texture and appearance of them, the brand that the day it wasn't on the shelf was the day I panicked and called the GP.  
We were soon referred to a Speech and Language Clinic - this is always the first stop if your child is showing signs of an eating disorder just to check everything physically was working well and sadly, which is a weird thing to say, it was.  Bass was physically fine but not mentally fine around food. So then it became a mental illness, which is hard to stomach - your child has a mental illness, which means he's afraid of food.
But we also started to worry that something was wrong when we started to compare Bass to his friends and family members' children of a similar age.  The other children seemed to LOVE their food - actively enjoyed it, but not Bass.  He wasn't interested in food or being baby led weaned or picking up things or getting messy.  He certainly wasn't interested in anything on our plates, let alone his own.  Bass often gagged on things he put into his mouth and vomited if avocado was left on his plate or if someone was eating an apple for example. 
Bass also up until this point had only really had pureed food that was completely smooth - he absolutely hated lumps and any kind of texture because it would make him sick so I was still spoon feeding him.  He also hated the way food felt in his hands so didn't like to pick up things.
Instead of thinking oh what shall we try next with him, we were think God, it's a miracle he's eating anything at the moment.
I think the most heartbreaking moment came when Bass started school and the teachers used to find him hidden in the loos in fear of the lunchroom.  Bass absolutely hated lunch.  He hated the dining room.  The smells.  The cutlery. The other children enjoying their lunch.  He hated it all.  Yes so he would go and hide in the loos most lunchtimes because he didn't want to go in.  Going into the lunchroom was so daunting for him he hid in the loos!  It was so sad and because we weren't knowledgable we didn't really understand what was going on just that there was a problem.
But did we try EVERYTHING to get him to be less fussy?
Gosh.  We tried everything.  We tried really really hard.  There would have been nothing we would have wanted more than Bass to eat fruit and vegetables (to put it starkly he hasn't eaten these in their purest form EVER).  
So yes we tried REALLY hard.  We tried everything.  I've listed what we tried below:
+ We tried eating with him at the same time as him.  We had been told this would be good for him.  We still do this now.
+ We tried ignoring him and not putting any pressure on him.
+ We tried planes or trains going into the tunnel with the spoon and all that.
+ We tried letting him just have the spoon.
+ We tried taking it back to basics and trying stick food like carrots, sticks of cucumber and pitta bread and let him do it all and not have any cutlery.
+ We tried different types of rewards.
+ We literally did starve him.  We said no if you don't eat that, there's nothing else or anything different  and you don't eat anything until the next meal, which was awful.
+ We got two experts in.
+ We tried every type of food under the sun with him.
I think it goes with the territory of parenting - EVERYONE has an opinion or wants to offer their little piece of advice whether you have asked for it or not.
Managing Bass's eating disorder in the comfort of our own home was stressful but ok.  Trying to manage it outside of this environment was awful.  We felt so sh*t going to other people's houses with a child that was so fussy.  I was embarrassed that I was still spoon feeding him at six years old, that he only liked pizza or chicken goujons, that he had to watch a screen to eat, that he didn't love fruit or vegetables.  We felt like the worst parents and to blame quite frankly.  Up until recently we have always thought we must have done something wrong.
Going to other people's houses where you couldn't control what we were offering Bass was really really stressful not just for us but for Bass as well.  He was well aware that he was different.  He once said to me: “I wish I had a mouth that liked tastes.”  Also trying to explain to someone that bass wouldn't eat a staple tea like sausages, mash and beans made things like playdates either difficult or not possible.
Some of the comments we have heard over the years were… 
“He'll have some of that won't he?”
“What he won't have potatoes?!”
"What, he's only going to eat pasta?"
“I bet if you leave him with us for 3-4 days we could get him to eat.”
“He'll turn into a chicken goujon.”
“Just starve him.  He'll soon eat.”
“You're creating the issue.  If you just offer him spaghetti bolognese, that's all he'll eat.”
“You're too soft on him.”
“You're giving in too easily.”
“You're pandering to him.”
“He's controlling you.”
“He's being manipulative.”
“When he goes to school I'm sure he'll copy everyone else.”
I could go on but I won't.
I don't like to think about the comments for too long because I know that most of them really did come from a place of love.  They were trying to help and fix the problem.  I mean we had thought all of these things too!   I honestly thought at one point he was manipulating us.   It's laughable really now.
We have popped the pressure balloon!
Now, today, we have totally stepped back and Bass only eats what he would like to eat. We have taken the pressure away COMPLETELY and this is working for us at the moment.  I'm still desperate for Bass to eat fruit and vegetables and I really hope this will come.  We have been referred to an eating clinic so I cannot wait to hear and see what they do for him.
I feel sad for Bass in a society that is so fixated on healthy eating.  A day doesn't go by where Freddie, our two year old, asks: “Is it healthy?” I'm not knocking it for obvious reasons and I'm adamant our other children are allowed as much fruit and vegetables as they want but for the parents out there, like us, with a child who has ARFID or are fussy it's a pretty lonely place to be.
One of the major things we're judged on as parents is how well are children eat.  I suppose I'm jealous of the parents out there that haven't had our battle but I realise we couldn't have done anymore to help Bass.  He wasn't going to eat what we wanted him to anyway.
There is nothing I want more than to see Bass eat and enjoy eating but until that day arrives, I'm going to back off and not judge him.  He's ok. He's working it out.  I really don't care if he lives on chicken goujons forever as long as he's happy and anxious free.
The lady who diagnosed Bass with ARFID said every time Bass eats it's like he is doing a bush tucker trial.  You're putting in front of him dried up worms and saying you're not getting down from the table until you've finished them.  I would gag and retch too faced with this.

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