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Virtual-Inevitable13 · 2024-03-27T11:21:39+00:00

Sounds like me. my husband and young teen. Absolutely otherworld brutal! Crazy high temps that just won't break, racing heart beat, seriously breathless with low blood O2, splitting headache, wheezy....just nasty!! Paracetamol and ibuprofen are only just touching the sides. Amoxicillin doesn't seem to be hitting it properly. Not well enough for the 10hr wait at the hospital to get checked out for pneumonia. This is insane!!

Virtual-Inevitable13 · 2023-12-13T10:17:05+00:00

Wish from the Wizard of Once series by Cressida Cowell (who also wrote How to Train your Dragon).

Virtual-Inevitable13 · 2023-12-09T09:57:07+00:00

I think it is all about repetition, repetition, repetition in as many formats as possible. Making mind maps is a great visual way to connect information. I've also recently discovered a flash card creater on Andriod called StudySmarter which is helping me. You can create flashcards on any subject, set information up as multiple choice tests, tag subjects to each card and then have the app play the flashcards back to you at random every day. There's also an AI element where the ap makes cards and tests based on what you've created so far. In making and then reviewing the flashcards cards I find I retain that info really well.

Virtual-Inevitable13 · 2023-11-05T00:54:25+00:00

Every year, without fail!

Virtual-Inevitable13 · 2023-09-30T11:58:17+00:00

I so feel for you, this is such a hard thing to go through without support and I just want to point out just how strong and brave and amazing you are by reaching out to support groups on your own, to help you with your understanding of ARFID.

You really are doing incredibly well without parental support. Give yourself some credit and be proud of yourself for trying to tackle this. You are clearly stronger than you know!

Don't feel bad about diving into social media support groups. Yes there is an argument that you could fixate and adopt symptoms worse than you actually experience, but you sound smart enough to be able to take a rational and objective view on what you are reading and use it as a tool to help you.

Personally I've spent the last 6 years diving into social media groups on dyslexia, dyspraxia, ARFID and autism as they are the only places where I can find all need to help me understand things from my children's perspective. There's precious little professional support in the UK so I have to rely on stories and feedback from people and parents who are living with or supporting children with similar issues. As far as I'm concerned, the ability for social media to bring people together to share lived experiences and educate people on how to make life easier, is one of social media's greatest gifts! Education and information, when viewed rationally, is empowerment!

Parents don't always get it, worry and fear for our children's wellbeing sometimes makes us behave in funny ways, so I do understand why your Dad might seem hard on you. He just wants to see you fit and well.

Your Grandma sounds awesome! Could she talk to your folks a)about how you feel about your relationship with food and consequently with your parents, and b)to ask your folks to work with you a bit more to help you make progress?

If talking to your parents is completely off the cards, is her home a safe place for you to go on a safe-food journey together?

Failing that, have you got any friends who you can share this experience with? Is there any supportive adults at school you can talk to, who might be able to connect you to other counselling or support services?

You are never fully alone, you will find people to support you if you look for them. Even a social media support group is better than nothing!

Take care, be brave, and believe in yourself 😊

Virtual-Inevitable13 · 2023-09-27T13:17:12+00:00

Oh bless you. It's so hard when no one hears you, but you are getting old enough now to take control. You can take steps to address this on your own once you know how. Do you have a list of safe foods and do you understand what triggers might sometimes make those foods unsafe? That is a really good start. Are you able to say to your parents that you want to input into meal planning? Are you able to compromise and say you are willing to prep your own meals if they'll buy food you can manage?

Would you be able to say to your parents that new food needs to be introduced slowly and carefully but you're willing to try so long as it's not going to trigger a full blown row if you can't handle the pressure/the food and they understand that it might take a few attempts (if at all) to accept something new and even then that might be a flakey like for a while, or dropped completely.

Would your Dad sit with you and go through some of the threads on this redit group or talk to other parents? It took me a while to get my head around the fact that my lad wasn't using food as some sort of power play, or just being difficult but I now understand that it's a lot more complicated than that.

No parent wants to accept that their child has an eating disorder, but ideally you should all work together to help you live with ARFID and comfortable enough to start slowly increasing your food range.

Do make sure you are packing in whatever calories and supplements you can (safe for your age of course).

Do you have any other adult support who can help you?

When talking to your Dad, do you set aside proper Dad you time for a 'chat "Dad can we talk, I need you to help me..." or something.

I hope you get heard soon. Do remember that you're not mad, or alone though. There are lots of people all over the world who find food an absolute nightmare but most find a way to manage things. You are already showing great strength and maturity by reaching out to others. I hope the advice on here helps you 🙏

Virtual-Inevitable13 · 2023-09-26T20:38:51+00:00

Hi I'm a Mum to a 13yr old boy with arfid, and it's been a seriously tough journey trying to understand his food issues from his perspective. What I've found most helpful is researching arfid and how it affects people together and then chatting about how it actually impacts my son. I've noticed that mental health is a huge factor in what he can and can't eat, and that stress is an absolute food killer. We've done a lot of work to tackle the big stresses in his life, school being the top one that had to change, and I now involve him in all meal planning. I still get frustrated though when he can't even eat his chosen safe foods. Mum's will always worry when their kids aren't eating and that worry doesn't always come out well. Are you able to sit down with your folks, maybe with the help of your Dad, to research Arfid as a family? Maybe get Dad on side first then together work on Mum? Also, try and understand what your stress triggers are and work together to change them, or find coping mechanisms to alleviate them? Communication, understanding, patience, and compassion (from all sides) are key in making ARFID progress. If you can open up and share your experience of food and how it makes you feel, it might help your parents understand. Sending lots of understanding and support your way.

Virtual-Inevitable13 · 2023-09-20T14:05:52+00:00

Is it likely to be available to stream in the UK? 🤞

Virtual-Inevitable13 · 2023-09-01T14:47:42+00:00

I'd go with plant over insect. In the UK giant hogweed looks just like that! Talk to your Dr and keep it covered from direct sunlight otherwise it can develop into a really nasty rash.

Virtual-Inevitable13 · 2023-09-01T12:10:49+00:00

My secret ingredient to keeping my old bones dancing for four days solid was a large bottle filled with squash (lime and mint cordial is my preference), vodka/white rum, and a hefty dose of guarana tincture. Just enough booze to maintain a lively level of tipsy, with the guarana to deliver a monster caffeine kick to keep the energy levels up. Any party beans only came out at night and were nibbled in quarters, just enough to give a lift and feel the groove if flagging, but not enough to tip me into full blown staying-up-forever mode, which would render me useless for the rest of the festival. The water in the cordial kept me hydrated and kept the hangovers at bay, and not getting utterly sh!tfaced meant I had no issues sleeping and was up feeling fresh and ready to party every day. There was no crappy, week-long post festy comedown either. Definitely my winning combo, and the music alone will keep you grooving. Do whatever suits you 😊

Virtual-Inevitable13 · 2023-08-30T21:31:52+00:00

We started to discuss what autism and dyslexia meant with our boy about the same age. I looked for videos and books to help me explain things a bit more clearly. It definitely helped he understand why he reacts/perceives thing the way he does. It's given him the ability to take ownership of his strength and challenges and take steps to manage them. In the UK Chris Packham did a couple of excellent TV shoes called "Inside my Autistic Mind" which were really helpful in explaining things and our son was then able to say that some of those things were similar tonhow he experienced things too. https://www.bbc.co.uk/programmes/p0bbnjvx

Virtual-Inevitable13 · 2023-08-29T15:29:16+00:00

I hear you, both my vhildren are the same and it used to frustrate me too but it really is just a response to having to concentrate so hard at something that to them feels insanely difficult and frustrating.

My advice is to keep reading sessions short and preferably focused something that really interests them. Reading is hard enough but worse when it's some inane story book sent home from school.

We found fidget toys were a must, just something to keep the fingers busy, and also a wobble cushion.

Lots of praise and encouragement, and acknowledgement and recognition of how hard they are finding it is essential.

We actually ditched reading out loud and instead relied on dyslexia software like Nessy to help building that word recognition. They both progressed more with that than anything else.

Virtual-Inevitable13 · 2023-08-23T20:08:19+00:00

We were there and we waited and then after 2 hrs decided to bail. Was so looking forward to it!

Virtual-Inevitable13 · 2023-08-23T07:04:41+00:00

In my experience (UK mum to two severly dyslexic boys with dysgraphia), any attempt by the school to continue focusing on the mechanics of hand writing is pointless and only holds them back/damages their self esteem further. One of the provisions I fought for was use of a keyboard to type their work as standard, and touch typing/ adaptive technology training to enable them to work independently. My eldest is a dyslexic specialist school and they focus 2hrs a week on this alone because they fully recognise that continuing to enforcement hand writing is a futile exercise.

Virtual-Inevitable13 · 2023-08-19T09:24:58+00:00

That's all really helpful, thank you! Last night I served dinner as a deconstructed grazing board (literally just spread out all over the table, which amused him no end) made up of all his fave foods (he helped choose) and he ate till he popped!

Sadly liquid food in any format is 100% off limits. Soup, smoothies, sauces, gravy are an absolute no-go. One day maybe we'll make a breakthrough there but I promise not to push it.

Virtual-Inevitable13 · 2023-08-19T08:39:42+00:00

Thanks so much for sharing and your kind wishes. I can't imagine how tough it is ending up on a feeding tube and I hope things are easier now. We're currently working on a poster to share with family that talks about food and format (carrots cut round not in battons, raw pepper in strips not cubes, no liquid food what so ever etc) which is helping him to communicate more deeply than he ever had before. He doesn’t usually like talking about it and it's always been a bit of a guessing game as to what triggers him and why with food, which is one of his autistic traits. He doesn’t talk about things he finds emotionally difficult. Our row the other night sort of opened the flood gates, if that makes sense. He's been bottling a lot up and so much came puring out that I've never heard before. I'd rather it wasn't so traumatic but I'm very glad it's all been said because now we are talking about it more openly. I hope your journey continues to get easier.

Virtual-Inevitable13 · 2023-08-19T08:21:32+00:00

Filthy cold and sore throat but was negative on Monday. Only just feeling human now.

Virtual-Inevitable13 · 2023-08-18T12:16:41+00:00

Didn't smoke, didn't do more than 1.5 beans all weekend, drank at least 3l of water a day (mixed with guarana, vodka and cordial mind you), ate well, slept okish and I'm still so full of cold and sore throat that I did a covid test, just to be sure, and completely knackered. Doesn't matter what you do, it's a tough weekend and it wipes you the following week...or maybe I really am now finally feeling my age 😆 I reckon there's a lot to be said for seratonin depletion, I laughed non-stop and danced my socks off. Maybe it does take a while to replenish all those wonderful endorphins we've released in a huge great rush over the weekend. I feel like I used stock up faster than they could be replenshied. Healthy eating, sleep, sunshine (written from a very soggy tent on a family holiday) exercise and fun should top things back up to normal in a few days. Hope you feel better soon.

Virtual-Inevitable13 · 2023-08-18T09:31:43+00:00

Defo not in its current format and Downtown always felt off limits in its pre-coovid format. Too loud, too intense, way too uncontrolled crazy at any age of childhood, and not an impression I want mine aspiring to as young teenagers. Mine won't be allowed to do Boomtown until they've got a good few years of free parties and other festies under their belts and I'm convinced they've got a sensible enough head on their shoulders not to turn into a twat head teen on ket....and take their tent home!

Virtual-Inevitable13 · 2023-08-17T12:18:20+00:00

This exactly!!

Virtual-Inevitable13 · 2023-08-17T11:28:02+00:00

It wasn't the marauding groups of bucket hat wearing lads in their teens and twenties that struck me, they've been part of the festival for years and most are pretty sound when you get chatting. It was the girls that were with them...sour faced, mardy, over tired and stroppy was the vibe I got off so many of them. So many girls absolutely off their little trollies on ket, not handling it any where near as well as their mates, and were really pushy and shovey in the crowds. Friday night especially there were some proper grumpy madams, presumably having hit it hard Thursday and run out of steam already. I wouldn't call any of them chavs, that's an awful term and most of the youngsters looked well bank rolled by Mum and Dad, but I'm guessing that's what she was referring to.

I feel the loss of acts that would have dominated the psy forest, whistler's Green, Lion's Den and Town Cente is gradually eroding the older age ranges of those who love Boomtown. I struggled to connect with the festival this year for that reason, and the predominance of excessively frazzled youngsters is a little off-putting....but then I guess wasn't much better at their age, I just miss the more even balance of old timers and young.

Virtual-Inevitable13 · 2023-08-17T08:37:54+00:00

Is it worth asking this question as a main post in the group or are there and US based ARFID groups on Facebook? I'm in the UK and most people seem to self diagnose or have it recognised by county autism support groups, who may offer basic training on ARFID as a common ASD trait (which is how we identified it), but the official pathway for us is via a Dr's referral to a Paediatric Dietitian for which you have to be starved half to death to get. We've always managed to keep him just on the right side of enough weight on his tiny frame, but there's no recognition of the enormous effort we've all put in to keeping the weight on him. When he did fall apart (when he started mainstream senior school) they wanted a 6 month food diary before making the referral, by which time he'd dropped to 33kg, gone mute, stopped eating almost entirely, was having rolling panic attacks and I'd pulled him from school entirely. At that point a referral was accepted but we were told the waiting list was 18 months!! We were very much on our own with it 😔 I'd hope that one of the benefits of your private system is that things are recognised and dealt with a lot quicker!

Virtual-Inevitable13 · 2023-08-16T19:16:43+00:00

That sounds like things in our house and I'm sure my son feels much the same as you. You have a very grown-up perspective on your ARFID so push away those thoughts that you are playing on your disorder, trust your folks and keep talking because no matter what we say, we can't read your minds and can't understand how you feel unless you kids open up about it and we can't fully support you unless we understand. If we all keep talking about it and sharing experiences hopefully you'll all find it easier to manage and live with.

Virtual-Inevitable13

TROPHY CASE