Is this a reasonable adjustment or do I need to get a drs letter for packed lunch issues ?

[packedlunchproblems]

Ds has ASD (and possibly ARFID) . Only eats certain foods and lunch every day for years has been sugar free squash, a banana, a pack of mini breadsticks, a babybel and a big petit filous pot. School have changed the rules this year and now say only water or milk. Do I say it’s a reasonable adjustment and keep sending the squash or will it require a drs letter to allow him to continue to have this as it’s the only thing he drinks

Look I admit I was absolutely wrong and didn't understand the complexity of the condition and ensuing issues for the OP DS.
However to your point about fluid intake tea and coffee come with caffeine which is not recommended for children and also they do have a diuretic effect. Sugar free drinks that have sweeteners bring other issues, as sweeteners have other effects on the body including stimulating insulin production (when it is not needed) and many folks do not like to drink milk for various reasons including allergies/intolerance. Water is (in this country) a very cheap and freely available drink with none of the above side effects so whilst I totally accept this DS has a condition which limits his ability to freely drink water. And as an adult you can of course choose not to drink water but it's certainly going to pose limitations in life if you can never drink it.

i wonder if there's therapies the GP can refer to to assist with this condition and to help the DS longer term accept water as a drink. But I have no experience in this area so no clue if its even possible

Yes we do the same. School know but don't mind as long as it isn't obvious to other children.

it can improve with age, yes.

however, at 18, my DS has eaten the same exact meal for breakfast, and lunch, for 14 of those years and a variation of the same 4 or 5 for dinner. he will not add to it. He also ONLY drinks water since he was 6.. thanks to those 'healthy eating' assemblies that demonised squash/juice.

ARFID may only have recently been 'officially' diagnosed, but its been well known as a problem since my son was about 7, although back then it was lumped in with sensory processing disorder.

We were offered therapy, but the dr was on sabbatical and no-one bothered to ever pick it back up with him as they never returned to the UK....

The main take away for anyone not familiar with it who might be reading the thread is that getting fluid into ARFID kids is the main importance, the type of fluid, be it squash, water, juice, tea/coffee/hot chocolate isn't the important thing.

Rule 1 for Arfid is the old adage 'fed is best' and nutritional concerns are the last of your worries. Let them eat what they'll eat and support with multivitamins.

So I used to volunteer in a school. The level of crap food eaten in the staff room was immense!

So?

My comprehension is just fine although I can see that you struggle with it. The NHS website does not say that other liquids are ‘just as good’ as water; they say that they ‘all count’ as fluids. Tea and coffee contain caffeine, sugar free squash contains sweeteners which are chemical crap.

Hi @packedlunchproblems my dd has similar issues. Our school classed it as a reasonable adjustment. Go on and talk them.

It’s so hard @Foxxo, I know. My sister lives in fear of my nephew’s safe foods being discontinued or the recipe changed. He hasn’t eaten anything other than them since he was about 18 months and regularly goes on hunger strike. He’s recently started “pocketing” which brings with it a risk of choking. It’s so worrying.

As a mum of a son with ARFID, he'd be drinking his squash in whatever bottle he's prepared to drink it from and I'd be physically going to the school and talking to anyone and everyone until it's sorted.

A child with ARFID won't simply drink something different or from something different, so it isn't a choice. They can't prevent him from drinking. They need to do some training on his eating disorder!

Yes indeed. I'd be talking hard about reasonable adjustments. My DS with autism and sensory issues can only tolerate a certain brand of school, trousers (M&S). The school, specifies that the trousers have to come from the approved supplier (not M&S, but the same fucking colour, and £30 a pop). He can't cope because the material is different.

I have had to have a robust conversation about reasonable adjustments.

I hope you can work this out OP. It must be so worrying for you. I work in a secondary and restricted eating is something we are seeing more of and it is a concern that little treatment is available.
I'm sure you are on top of this but sometimes even mental health services aren't dealing with this, it is treatable its just hard to find the professionals who can work with the children.

Why are you so invested in this autistic child not having a bit of squash in their water?

Leave them alone - they have a solution that meets their sensory needs. It is quite reasonable to accommodate their sensory needs.

I remember all drinks being banned in primary school except water. But it wasn't fresh, filtered cold water. It was set out in filthy smelly plastic jugs at the beginning of the day and left to fester until allocated to us at lunchtime. I still remember the smell! That put me off drinking water for about five years!
I was going to say you could try gradually making the squash a bit weaker each time, to get him more used to a plainer taste. But if he needs it in a specific packaging already mixed then I could see that might not work.
Definitely speak to the school.

No, absolutely DO NOT reduce squash to get them drinking water.

you NEVER EVER remove something from the diet of a kid with ARFID, every food or flavour has the potential to be a stepping stone/gateway to other tastes. Quite often the path forward involves a lot of side steps.

You like orange squash? How about orange juice? Well now they're drinking orange juice, how about tasting an actual orange?...etc.
The drink orange juice, well, why not try orange and peach? You like peach? how about tasting a peach? You like the taste of peach, how about peach yogurt? You like yogurt, what about.. ice cream?

As i said, my son will ONLY drink water. i have completely lost the pathway to getting him to drinking any other flavours of fluid, to ever even trying juices, or god forbid, something more adult in time. He can't even tolerate sitting next to someone drinking squash or cola.

I’m in my 50s and have ARFID and there are people who have known me for years who still struggle to understand how it affects me. “Just try it, you might like it”. No, it doesn’t work like that,

I’m curious to know how you discovered your child would only drink squash? At what point was squash introduced to DS and why?
My kids only had water or milk until they were maybe 8 or 9. If we ate out they would have diluted fresh fruit juice for a treat. I’ve never bought cordial.

You say he only takes it in the original packaging, is he taking in a literal squash bottle? Surely it’s being diluted and put in a water bottle and therefore you can do this with a non see through bottle.

I feel sorry for schools nowadays

ARFID is an condition which is under diagnosed and many NHS trusts wont treat it, or diagnose it. And those that do normally only refer to a dietician. Many parents (myself included) have to go private to get a diagnosis. In my area Arfid is not treated if the person also has an ASD diagnosis, and in my neighhbouring trust there is not team that supports individuals with ARFID, and CAMHS will reject the referral.

OP - are you on FB? There is a UK ARFID group that can be very supportive and you can get some advice. Better a group with people that understand that one where people make ignorant comments.

(From the Mum of a 17 year old who only drinks one type of squash, wont drink plain water and mlk makes him gag).

I have a child with ARFID who only drinks water and for years the dietician has suggested small alternatives to try to get nutrients or medicine in. So perhaps antibiotics are needed and they can’t be hidden in food but maybe squash or juice will disguise the taste etc.

I appreciate your curiosity but surely you can see circumstances when drinks and foods you haven’t needed to try, because your child isn’t disabled by having ARFID, might become the norm?

Food and drink chaining is a very common sensory occ therapy treatment that is attempted with ARFID eg a child drinks water, now see if they will drink weak squash, now juice, now tinned fruit, now fresh fruit, now a different type of fruit etc. Sometimes the chaining works but ARFID children frequently drop previously safe foods and drinks and when that happens, especially when you end up in hospital with a child being peg fed and IV rehydrated, you will try anything - because that is the reality of ARFID.

I’m guessing it’s ready made squash in a carton.

Why do you feel sorry for school in this scenario? Genuinely? A child with a complex feeding issue needs an accommodation it’s really no big deal. It really really isn’t.

It needs to be in a water bottle, the same as the other children, or I don't think school will see it as reasonable.

You can't have one kid who's allowed a carton of orange in amongst all the others every lunchtime who can't, simply because of a preference, which is what it will look like, especially without any diagnosis.

But the OP says the child has been diagnosed with autism and the Equality Act doesn’t state someone needs a formal diagnosis, just a condition with a long term impact. Sensory needs with food and drink and autism are regular occurrences even without the possibility of ARFID.

On your basis of what you can and can’t have one child doing, do you extend it to not allowing a child wheelchair because they can’t walk simply because it is their preference for how they get around?

If it's a packet simplest might be ask class teacher to let him drink it in the classroom after letting the rest of the class out to break or lunch? That's what I'd do. Simple and avoids arguments with the midday supervisors!

You CAN, and it isn't a 'preference' ffs.

I am really unimpressed that just having a chat with school wouldn't solve it and you would actually need a doctor's letter to verify it. I would hopenthat school would know that Asd and arfid are often common together and would have the sense to be able to allow you the squash.

I suppose, being generous, they maybe would ha e people taking the piss and would have to deal with "why's Johnny allowed juice and I'm not?" Questions, but I'd like to think common sense would prevail.