Help! Again! Food/h...
 

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Help! Again! Food/hygiene issues with autistic child

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Here we go again... Fostered child, suspected autism (or possibly emotional distress / anxiety because of his chaotic childhood), he's always has had issues with people touching his food, plate, serving utensils etc (although this is moveable - in some circumstances, it is okay in his head. For example, I can make him a sandwich but if he saw me pick a frozen fish finger out of the box with my fingers he wouldn't eat the cooked item).

Anyway, last night my wife made him mashed potato and he found a hair in it. He went absolutely ballistic (which is understandable, we understand why). He wouldn't eat any more, started crying, then showered to 'clean himself' until he'd emptied the water tank (which is massive - he was in there a good 20+ minutes). He then told us that he will now only eat pre-packaged food (in his head this must be clean/hygienic although of course, it may not be). He continued to be upset, more crying, and eventually went to bed but we believe he spent most of the night (if not all) still crying, he got up this morning for school still in a state of distress, still crying and complaining his eyes hurt (not surprising) and still not eating.

So now we have to confront this – of course we cannot possibly just feed him pre-packaged food but he is very stubborn (see my last post about the touching of a water bottle – he still refuses to use it).

I am not sure quite why I am posting this (perhaps I am just venting as I am now having to work from home which I hate) but I am hoping someone may have experience of similar behaviour and can suggest strategies to get him to eat the fresh food we prepare for him in the short term and, longer term, how to try to minimise his complex issues around food, touching and hygiene.

Thank you!


 
Posted : 21/09/2023 12:41 pm
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From your posts i honestly think the lad needs someone more qualified than us lot.


 
Posted : 21/09/2023 12:42 pm
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I have nothing to offer, only to say that you and your wife clearly have the patience of saints, and I'm in awe of what you're doing.


 
Posted : 21/09/2023 12:43 pm
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From your posts i honestly think the lad needs someone more qualified than us lot.

The problem is that he will not engage with professionals, so anecdotal advice / experience may help us devise strategies to try to help him.


 
Posted : 21/09/2023 12:44 pm
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There's nothing wrong with coming in here to vent, and I think that Weeksy is spot on too. Assuming such support won't happen quickly though, would he join in with preparing meals so he has some control over the process?

Caviat, I'm in no way qualified or experienced,  just a thought off the top of my head.


 
Posted : 21/09/2023 12:48 pm
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Well done for fostering, I know I couldn't take that on.

What do the fostering support staff have to say about it?


 
Posted : 21/09/2023 12:49 pm
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Maybe he goes shopping with you and chooses his own food and then he cooks it with your help.  Maybe just to get something inside of him initially and then see if this can progress to something more liveable?

My son is autistic and can be fussy about his food, I just power through this.  We have had some stand-offs but normally back to normal service once he gets really hungry.  Me and the wife play good cop/bad cop taking turns.

I refuse to be a short order chef, my wife is more flexible.  Over the years of hard work he now eats really well.


 
Posted : 21/09/2023 12:54 pm
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What do the fostering support staff have to say about it?

My wife will be contacting them later today, but I think we'll have to wait for the next PIPA (Clinical Psychologist) meeting which is in a couple of weeks to get meaningful professional advice.


 
Posted : 21/09/2023 12:55 pm
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I have an idea.

You are clearly in a position now where professional help is required. He won't engage with them. But there's nothing stopping you from engaging with them and getting some expert guidance.


 
Posted : 21/09/2023 1:05 pm
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There's not an easy solution, and I wouldn't expect much in the way of useful support - it's a bit too specialist/difficult of a problem.

One tip I can offer, is to find a selection of meals which do work and at least make sure the lad is getting adequate nutrition.

Even when he has his autism diagnosis (which I'd bet my house on), I don't expect it is going to unlock effective support for this kind of thing.

Oh, another thought, if the lad really will only eat pre-packed foods then it might be worth broaching the subject of the LA funding those. They may have discretionary funding for special needs kids.


 
Posted : 21/09/2023 1:06 pm
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Simultaneous post, sorry.


 
Posted : 21/09/2023 1:06 pm
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My wife will be contacting them later today, but I think we’ll have to wait for the next PIPA (Clinical Psychologist) meeting which is in a couple of weeks to get meaningful professional advice.

A reasonable approach. De-escalate with the pre-packaged food in the meantime, chances are his childhood has layered trauma over trauma over whatever personality he had in the first place, unpicking it won't be a short-term thing, maybe not at all in the period he's with you.

Chances are you're doing a good job and really helping him, regardless of how difficult it feels day to day.


 
Posted : 21/09/2023 1:18 pm
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I have an idea.

You are clearly in a position now where professional help is required. He won’t engage with them. But there’s nothing stopping you from engaging with them and getting some expert guidance.

We *do* get professional help – we have a psychologist meeting every two weeks (with us, the psychologist, our social worker and the child's social worker). There is no way we could get an emergency meeting for this (we may be able to if he hasn't eaten in the next 48 hours I think).


 
Posted : 21/09/2023 1:25 pm
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Glad you are getting help Johndoh, and good luck resolving the situation. I'd agree with the trying to get him to help with the food prep, but I know how hard that can be.

Just to add some weight to why don't you get some. 13years off asset stripping by the government has meant there is no help unless you're at a cliff edge.  I wish that was just a metaphor, but some folk know that's the only way to get into the system in an emergency. Waiting times are a joke for children's mental health. Once you are in, they will kick you out at the merest sign of coping...


 
Posted : 21/09/2023 2:17 pm
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I’d agree with the trying to get him to help with the food prep, but I know how hard that can be.

Another vote for that, from my position of complete ignorance and lack of experience in the field. Maybe watch some food hygeine training videos on YouTube together first?

And +however-many-it-is to your dedication as a volunteer!


 
Posted : 21/09/2023 2:32 pm
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This is hard. Trying to see from the point of view of another when you cannot rationally comprehend how they are thinking.

Whilst almost impossible it is important not to react to it however unreasonable the behaviour may seem. If he’s in fight or fight you can’t tell him off for being scared. not saying that you did.

Often it isn’t usually the issue that presents that is the root cause of the problem, so it is likely to be a build up of stuff such that the food at the end of the day is the final straw and so I suspect this is why it is only sometimes that it is a problem. Consider reducing demands at other times, what is an immovable requirement e.g no violence and what is actually just preferable e.g. tidy room or perhaps just let him get/dish up his own food - try and agree what it will be even if not as healthy as you like. Another thing you could ask him is if He might also prefer to eat separately or in his room, if you all eat together he might find that focus too stressful

once he becomes more regulated then you can work on those other rules.

Have you considered getting some independent support?  This won’t be cheap but could be an investment. A speech and language therapist for example if communication is a challenge for him. Speech and language therapy isn’t just about can you’talk’.  They can go in to the school and provide help for teaching staff too or come to your house.

Good luck


 
Posted : 21/09/2023 2:50 pm
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School is a stressful place that will be emptying his reserves.  Any feed back from teachers or him onWhat is school like for him. good that he is happy to go. Does he have any friends there? Could you have any of his friends round, or try and cultivate some friendships with kids at the school for him. Again easier said that done!


 
Posted : 21/09/2023 2:56 pm
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Another thing you could ask him is if He might also prefer to eat separately or in his room

Interesting that you say that as he went to respite care for a week over the summer to give us our first break from him in a year. They let him eat separately and he asked if he could do that when he came back to us. However, we try to eat as a family (he's never had the experience of 'normal' family life).

Have you considered getting some independent support?

As I said earlier, he 100% will not engage with professionals. It wouldn't even be worth the effort of trying to find someone suitable.

Any feed back from teachers or him onWhat is school like for him.

He presents as perfectly fine at school - he is incredibly intelligent so gets on academically and is very proficient at masking. This is part of the reason why he explodes when he gets home.


 
Posted : 21/09/2023 3:04 pm
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It sounds like he has a problem that he cannot or doesn't have the skills to communicate to you, and so he is expressing it via the food issue. In other words the food isn't the problem, it is something else but he's unable to tell you what it is

God knows I'm no expert nor do I have children but I have seen this happen in my mates kids who have experienced trauma, and I have seen it in kids through outdoor Ed work.

It's possible he feels safe enough with you to be able to get so upset and vulnerable and that is probably a positive in the circumstances

Good luck I sincerely hope you can get to the bottom of it, whatever it is


 
Posted : 21/09/2023 3:43 pm
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Just huge respect for what you are doing. I agree the short term solution may be to see if he is encouraged by helping with shopping and cooking so he has some control and involvement.

They may have discretionary funding for special needs kids.

I hate to say it, but that is already being squeezed as councils are forced to review spending to balance budgets. MrsMC is already encouraging adopters to apply sooner rather than later, and friends who have adopted have seen support reducing.

Not the councils fault. They all know that a few thousand spent now will save many times that over the lifetime of the child, but they simply don't have the money or resources.


 
Posted : 21/09/2023 4:28 pm
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Holding it together at school and then loosing it at home is very common for neuro divergent kids. They mask at school but this is stressful.

Whilst you feel thst eating as a family is a good thing (and it is in many ways) maybe relax that a bit for a while especially if it has been requested. This sitting together might be a really stressful time for him and so it isn’t necessarily the food hygiene that is the key issue. You can find other ways to make him feel part of the family. A game after dinner or something?

If you get a good speech and language therapist to come to him they will engage with him. Especially if they are regular, they  can build up a rapport. Unfortunately, state funded support is pretty much non existent.  They will likely be 100p/h sort of money though.


 
Posted : 21/09/2023 5:22 pm
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Some people with food issues/eating disorders find eating in front of people really stressful. And some autistic people find the experience of other people eating around them something of a sensory overload. Perhaps you could try having a small separate table that he could have control over, but that was still in the room where you eat? A sort of compromise between eating alone, and eating as a family? He could lay it himself, wipe it, have his own ketchup, wear noise cancelling headphones - whatever he needs to feel more comfortable? At least you'd know he was eating then.

I think the cooking together idea sounds good too, but maybe best tried when he's not tired after school? My son (albeit, not autistic) has come to love cooking and finds it relaxing now he knows how. Something really simple like an omelette might be a good place to start - nice sealed packages that eggs are! And if he's into it, batch cooking something at the weekend that he can box up and know is 'his', then have microwaved midweek (and do himself if he's bothered about it) when he's worn out from school? Even if that was baking a pasta baked from a (sealed) jar of sauce and (sealed) packet of pasta, it might open the door to future cooking that was a bit less pre-packed.

Do you have a 'spoons' or similar set up to gauge energy/capacity? Perhaps you could set something up along those lines so that when he comes in from school he can let you know he's down to two spoons, or feeling pretty good with four spoons left? It might help you know when to take extra care around trigger issues?

Good luck. You're doing a good thing.


 
Posted : 21/09/2023 5:32 pm
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Can't really offer advice. I know it's difficult. My two young boys are diagnosed ASD and de-escalation seems to be the key. Found it difficult to break away from the mindset of punishment for bad behaviour. Raising my voice has just taught them to do it. They need space, they can't control it, just got to be there for them. Due to their diagnosis learnt I'm likely ASD too. "high functioning" I can do my job 9-5, it's a defined environment; do job, chat shit, go home. Socializing outside of defined environment, barely a clue.


 
Posted : 21/09/2023 8:41 pm
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Couple of things

But first massive respect to you and your wife.

When you speak to him do you face him? If yes try standing near him looking where he is looking not facing him.

As previously his distress is real and may be in part a response due to autism spectrum behaviour but from your description could be anxiety/ stress caused by trauma. The kind of control behaviour that he is showing is completely understandable if you have had no control. So, give him control. When my daughter stopped eating we stopped eating around a table and started watching tv. This meant the food wasn’t the focus and so she could eat on her terms.

Similarly think about how choice is offered. For eg. Your room needs to be cleaned I can say “go clean your room” or I can say “how can I help you clean your room” this again changes the focus from the room being cleaned to offering choice. Again with my daughter we don’t leave it as an open question but rather say “this will happen, would you like it help in format A or B” as too much choice is over whelming.


 
Posted : 21/09/2023 10:10 pm
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One other. I’m guessing that you haven’t been offered additional communication tools.
Does he have a phone or a tablet?

If he does or you have one he can use then they make a really good avenue for communicating complex feelings simply when we feel threatened, trapped or misunderstood. Really because they depersonalise the situation/ or more accurately are indirect.

When he is feeling unstressed ask him how he could use a tablet to communicate with you. This could be showing you an image or writing a message. It is then up to you to take time to listen to him by asking him leading questions that are generated by the interaction. Many young people don’t have all of the language they need to express themselves and worry they won’t be listened to or understood. Importantly encourage the use of images as part of the communication process of this helps (ie just because someone is verbal don’t discount using images).


 
Posted : 21/09/2023 10:24 pm
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Thank you all for your thoughts and ideas – it's all useful and lots of it resonates. We know that his trauma is deep and complex – as far as we are aware, he only has memories of fending for himself, of living in complete squalor (imagine one of those filthy houses you see on Channel 4 programmes about hoarders etc – it was every bit that). His mother loved him but couldn't provide, fighting alcohol addiction.

We have a meeting with his social worker today – she's next to useless but we'll see if she can come up with anything. We have found a private Play Therapist who has successful experience with non-verbal LACs so we'll just have to see if Social Services will be able to fund it.


 
Posted : 22/09/2023 10:24 am
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So here we go again... Taking on board some of the advice given on here, I suggested to R that we make a meal together – he wanted boiled rice with vegetables and chicken. Great - we got the rice on, I put the chicken in a pot with some spices (which he saw me do) and he started to prepare the vegetables. All was going great, then I went to get the chicken out of the oven to turn it. I took it out using an oven mitt, peeled back the tin foil from the pot and, using a clean fork which he saw me get out of the drawer, started to turn the chicken pieces. Suddenly I got 'NO! NO! NO! I AM NOT EATING THAT' and sobbing. I asked (calmly) 'what is the issue?' and he ran out of the room saying 'STOP SHOUTING AT ME'. I went to his bedroom door and asked him to come back down and finish preparing the vegetables because, even if he wasn't going to eat the chicken, we wanted him to eat the food he had prepared. He came back down and my wife took over (he ordinarily responds better to her) and she asked what the problem was as we always do exactly that with his chicken and again he repeatedly shouted (ironically) 'STOP SHOUTING AT ME' (of course she was not shouting, she wasn't even raising her voice or using a firm tone). She told him that if he can't speak in a normal tone and explain what the problem is so we can understand him, to leave the room and not come back until he was prepared to stop shouting.

Eventually, he came back, prepared his vegetables then served himself with everything, including the chicken, which he ate all of!

So confusing. So exhausting. And it was a shame because he'd had a great day – he had tried martial arts class for the first time (a breakthrough) and loved it, and hadn't holed himself away in his room as he often does.


 
Posted : 25/09/2023 10:16 am
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So confusing. So exhausting. And it was a shame because he’d had a great day – he had tried martial arts class for the first time (a breakthrough) and loved it, and hadn’t holed himself away in his room as he often does.

Still a great day.

I'd love to get a day like that at the moment (not to diminish your struggle obvs).

But yeah, it's exhausting eh.


 
Posted : 25/09/2023 10:21 am
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This sounds so hard and huge credit to you and your wife. I don't have anything to suggest, other than to say we are pretty sure @p20's life long issues with food are due to autism.  Until his mid-30s he pretty much only ate dry cereal, pizza, chips and greggs pasties; and he is very much still alive and well (long covid aside - and all recent blood tests, now in late 40s with much improved diet admittedly, are fine), though was maybe a bit under weight at times when younger.  I am only saying this to say don't put too much pressure on yourselves - just accept at times he has eaten, and yes pre-packed food is absolutely far from perfect - but if it gives him the energy to go to school and learn, that in itself is a win.


 
Posted : 25/09/2023 10:37 am
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I forgot to say - his eating the chicken was definitely a breakthrough. In the past, once he's made a decision on something, he's never gone back.

Ohh, and to make the whole %^*&ing thing more confusing and contradictory, he asked if he could give our dog a piece of water melon. We said yes, then saw him let the dog take a bite of his slice, then carry on eating it himself!!!!


 
Posted : 25/09/2023 10:47 am
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I used to have contact with a kid on the spectrum who would only eat on his own and would only eat fish fingers and chips. He became grossly overweight but the stress was taken out of the situation. Was a bit sad to see him withdrawing from splendid Christmas dinners. Hats off Johndoh, very admirable what you're doing.


 
Posted : 25/09/2023 10:51 am
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However hard it is to you and your wife, focus on the tiny breakthroughs and come and vent on here about the rest.

You. Are. Amazing. People.


 
Posted : 25/09/2023 12:10 pm
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I asked (calmly) ‘what is the issue?’

Perhaps ask "what was the issue?" after the event, now that he's calmed down?


 
Posted : 25/09/2023 12:32 pm
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Do you keep a diary of his behaviour? It might be useful to see if there is a pattern to what happens, if it is on certain days or after specific events.

I am currently doing an online CBT course and I keep a daily diary of how I feel and what went on that day. It's very interesting and really helping to identify the areas that cause anxiety


 
Posted : 25/09/2023 12:50 pm
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Perhaps ask “what was the issue?” after the event, now that he’s calmed down?

We tried that - once he calmed down we just got 'I don't know' and shrugs (this happens with every outburst - he just tries to deflect and downplay it).

Do you keep a diary of his behaviour?

No we don't – but it all gets reported to his social worker (the big outbursts anyway – if we reported everything I think she would block our email address 😉 )


 
Posted : 25/09/2023 1:36 pm
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I don't have any real advice to give bar " the squeaking gate gets the grease" ie complain and keep on doing about the lack of support

I cannot help feeling you have been given a task that is too big for your skills without the support you need.  I admire very much what you are doing but you should not be struggling without support


 
Posted : 25/09/2023 1:43 pm
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Second the idea of keeping a diary. When we were going through prolonged periods of challenging behaviour with our daughter a few years ago, keeping a diary helped identify some triggers and patterns of behaviour. It also possibly helped us in meetings with professionals where we were asking/ begging for more support.

Though appreciate in your situation that may raise some trust issues around privacy if he felt you were just keeping notes on his negative behaviour.

Sounds like there is definitely some anxiety issues around food, but could some of the outbursts be a release/ outpouring of emotions built up during the day (in an environment he feels safe enough to do so)?

Our daughter took the same 5 pack lunch items to school for about 7 years (she wouldn't eat anything else we tried to add). Then out of the blue she said she wanted to try something else!

As always admire your persistence.


 
Posted : 25/09/2023 1:46 pm
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I cannot help feeling you have been given a task that is too big for your skills without the support you need. I admire very much what you are doing but you should not be struggling without support

Absolutely - we are first-time foster carers and he was meant to be with us for 'a few days' in May 2022 as they were desperate to place him and he had nowhere to go. We got the call at midday and he was at our house four hours later. To be fair, we knew then and know even more so that this is how it works and we *have* made huge strides with him – he has been known to the social services since he was 2 or 3 (he's about to turn 13) and the progress he has made since he came to us has been quite significant apparently. And we *do* get support but we know the service is vastly over-stretched and under-funded so we are realistic in what that support will look like. At the end of the day, he's getting more from being with us than he would probably be getting otherwise - being passed from short-term respite carers to more respite carers.


 
Posted : 25/09/2023 2:25 pm
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At the end of the day, he’s getting more from being with us than he would probably be getting otherwise – being passed from short-term respite carers to more respite carers.

I am sure - just watch out for carer burnout


 
Posted : 25/09/2023 2:45 pm
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just watch out for carer burnout

Yes, we are aware of that (and we do feel it) - we have been pushing for respite for ourselves since the turn of the year (it has happened once and he went on a council-funded adventure course for looked after kids, so 11 days worth of a break)! We think we have someone to have him for two days in a couple of weeks (fingers crossed). There's just not enough carers to meet the demand 🙁


 
Posted : 25/09/2023 2:49 pm
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Ohh, and to make the whole %^*&ing thing more confusing and contradictory, he asked if he could give our dog a piece of water melon. We said yes, then saw him let the dog take a bite of his slice, then carry on eating it himself!!!!

Sounds more like a control issue, rather than the food. He was in control of that situation, so he allowed it to happen as the dog will be easier to influence than the rest of you.

Sounds like you just need to let him cook for himself in the short term if that allows him to eat.

Then if hes good, then let him cook for the whole family and see where that leads?


 
Posted : 25/09/2023 3:02 pm
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We used to have a scout in our group that was with a foster carer. The foster carer had been a mental health nurse & was working through a lot of issues with her (history of familial abuse).

we noticed that whenever we were cooking she had a voracious appetite for a skinny lass. Speaking to her foster mum, the girl had experienced so little control over her life- abuse at home, moved into care & from one carer to the next that food was the one thing that she could exercise control over.

for those of use not used to these situations it’s hard to comprehend that the eating isn’t an issue but the manifestation of a different problem


 
Posted : 25/09/2023 3:06 pm
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being passed from short-term respite carers to more respite carers.

Or more likely, at his age it will be into a residential provision which will be much, much worse for him.

There’s just not enough carers to meet the demand

Very much this, we have over 900 children in care, with fewer than 100 'mainstream' foster carers (the ones that will take any children) and around 70 'connected' carers (grandparents & family members who care for a family member).

The other kids? We are at the mercy of the hedge fund owned 'Independent Fostering Agencies' who have unlimited marketing/recruitment budgets, scoop up potential carers and charge over the odds to the local authority who have parental responsibility for the child. They are wholly unethical, and it should be ****ing outlawed...but rich people have to get richer right?

Fostering is tough, so often thankless and incredibly frustrating when trying to navigate the system to get the best for the child in your care. Thank you Johndoh.


 
Posted : 25/09/2023 3:20 pm
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once he calmed down we just got ‘I don’t know’ and shrugs (this happens with every outburst – he just tries to deflect and downplay it).

Does he even know what he's doing?

Would videoing a tantrum and playing it back when he's calm help?

(probably one to run past the team first...!)


 
Posted : 25/09/2023 3:56 pm
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Does he even know what he’s doing?

I don't think he does - it's a switch. One minute he's fine, the next he is inconsolable/rocking back and forth/screaming/walks away/hugs the family dog (the type of reaction we get differs depending on why he is upset). When he come out the other side (which can be anything from 5 minutes to about an hour) you would not know he had been upset.

The only time he remains angry is if it is something that he wants and we've just said no to it – but that's just typical of a child in a huff for not getting their way.

Thank you Johndoh.

TBF, it is my wife that does the majority of the work with him, she deserves any credit not me.


 
Posted : 25/09/2023 4:17 pm
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The other kids? We are at the mercy of the hedge fund owned ‘Independent Fostering Agencies’ who have unlimited marketing/recruitment budgets, scoop up potential carers and charge over the odds to the local authority who have parental responsibility for the child. They are wholly unethical, and it should be **** outlawed…but rich people have to get richer right?

Having heard MrsMC quoting prices her authority gets charged, I know damn well that the residential care workers aren’t the ones getting extremely rich by exploiting the system


 
Posted : 25/09/2023 5:34 pm
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You might be surprised just how much residential care costs.


 
Posted : 25/09/2023 5:38 pm
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You might be surprised just how much residential care costs.

Having helped a local authority expose a major fraud from an adult care "charity", I know that despite the overheads in setting them up, there's a lot of scope for fiddling the figures


 
Posted : 25/09/2023 5:42 pm
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Fair enough.  I only know it in the context of nursing homes but costs per patient are much much higher than most lay folk understand.  I can see a couple of grand a week in staffing costs easily for a disruptive youth.


 
Posted : 25/09/2023 5:45 pm
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We spend upwards on £18000 on some individual placements, per week per child.

Complex needs and a broken care market.

It's not the staff getting rich.

My point about Independent Fostering Agencies should not be conflated with the issues around high cost residential. IFAs do the same as local authorities (provide foster carers that look after children in their own home). It's just that they are morally bankrupt.


 
Posted : 25/09/2023 5:56 pm
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@johndoh is there a foster carers support group you can attend? When I worked in fostering we held these regularly, and they are ideal for talking problems through with other carers who may have been though the same or similar situation , and from whose experience you can benefit. If there isn’t a group or you are not able to attend, you could ask to be paired up with another carer for some 1:1 support. Training or other get togethers are an ideal way of widening your fostering support network. Hopefully you have all this in place already though.
My other two thoughts were about being tested as a foster carer by your LAC, which I suspect you will have heard all about. Thoughts such as “are these the people who will stick by me? If not I need to know sooner rather than later”. A honeymoon cycle, rather than a period with a beginning and end.
my other thought you have touched on in your OP, attachment. It’s possible that your young person is stuck at a much earlier age than their chronological one, and can revert to a toddler tantrum stage. I suspect much as a toddler doesn’t know why they are tantrumming, your young person won’t either. Patience , distraction, etc as you would with a much younger child. Not asking why, or shaming them inadvertently. I would say filming them falls into this latter category and may be in contradiction to your safer care policy anyway.

it’s good that you have a clinical psychologist (?) you can talk to and I hope you find them helpful.   also seek support from your fostering SW which I think you said do anyway

you and Mrs Johndoh are doing an amazing thing, as rewarding as it is difficult.


 
Posted : 25/09/2023 9:01 pm
sc-xc reacted
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Eventually, he came back, prepared his vegetables then served himself with everything, including the chicken, which he ate all of!

So confusing. So exhausting. And it was a shame because he’d had a great day – he had tried martial arts class for the first time (a breakthrough) and loved it, and hadn’t holed himself away in his room as he often does.

Two breakthroughs, one day. Well done.

It's so hard not to focus on the outbursts, sometimes they will be the price of success. Perhaps the stresses of trying the new thing earlier meant he was walking the tightrope later on in terms of mood control?

You should definitely chalk the day up as a win. A tiring win, but a win nonetheless.


 
Posted : 26/09/2023 8:27 am
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is there a foster carers support group you can attend?

Unfortunately no – there used to be a good network apparently but Covid has put paid to all that. We are in contact with two or three much more experienced fosterers who are helpful, but that's it.

My other two thoughts were about being tested as a foster carer by your LAC, which I suspect you will have heard all about. Thoughts such as “are these the people who will stick by me? If not I need to know sooner rather than later”.

He knows ours isn't his 'forever home', but unfortunately social services cannot find him one. One household said they would take him permanently then changed their mind at the last minute after meeting him 😐

You should definitely chalk the day up as a win. A tiring win, but a win nonetheless.

I think you are right! He also went back to martial arts class last night - that's two more activities done in the space of three days than he's managed in the last 15 months that he has been with us.


 
Posted : 26/09/2023 9:37 am
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As a mildly autistic parent to a high functioning autistic 10 year old boy you have my total admiration. It's HARD.

Some pointers from my side: you remember the last episode of Chernobyl, in the hearing room with the simple explanation of how to keep a nuclear reactor in balance? Autism's sensory component is exactly like that. Your kid's brain will fill up with inputs and it will require regulation to calm down. You have inputs which add to the things that need to be processed (noise, visual, proprioceptive, stress) and therefore make the reactor tend to run away and regulatory inputs which aid in processing, calming the reaction down (my son skips, rides his bike, skis, climbs).

The items that increase reactivity may not necessarily be bad things - a particularly enchanting book, textures on surfaces he touches or even sees during the day, too much screen time, an idling cooker hood. Then there are the truly bad inputs which can dramatically effect reactivity and lead to meltdown - the boron tip on the control rod: sudden loud noises (dyson & airforce hand dryers can get fu%^3d!), people shouting, a car horn or even a door bell. Needing the toilet is somewhere in between these two and quite often the input from that is totally incorrectly interpreted as a stimuli rather than a flag saying "I need the bog". When we have issues with behaviour it's often our first line of attack & the fight to get him to accept the fact he needs to go can run to many rounds.

On top of that there's inputs that your child may use as regulatory forces, but which can, if unchecked, lead to cataclysmic events - the xenon poison in the reactor. For my lad this is anything with visual tracking: computer games, water running (pooh sticks screw him over big style), marble runs. You can tell it's getting to him as he'll stimm. His stimming output is jumping on the spot and flapping his arms. Mine is making a sound like a turbocharger. Took me 45 years to work that out. FFS.

Does he self regulate at all, does he: run, jump, skip, lift weights, physically fight/wrestle (not seen this but have heard it can be evident)?

The best regulatory thing we've found is forest schools. He started to go to one once a week after school from about age 5 where he'd explore nature, look after some chickens, cook things on open fires. Had an immediate, dramatic calming effect. Seriously it was like having his reactor fitted with not Soviet controls.

When we ran into an issue with his last primary school (evil witch of a SENDCO / class teacher decided the most appropriate way to get through to him was to shout in his ear) we turned to the forest school staff for advice. They recommended we move school to one that had a higher emphasis on outdoor learning. Again that had an  immediate calming effect. I do not recall one single school day in the last 4 years where he has protested about going to school. They also understand his need to self regulate and will just open a classroom fire escape & let him go off and skip for 10 mins. Utterly amazeballs.

Does he have a formal diagnosis and an EHCP? We were lucky and started the process a very long time ago. I know people who have 7 year olds that have, this year, been rejected from paediatrics as the waiting list is so long they will be dealt with as adults by the time they get to the front of the queue.

Simple things that help loads: fidget & chew toys - poppy silicone fidgets are great, but I also made some out of old chain & cassette sprockets; ear defenders (in ear or external "working in the turbine hall" jobbies) - almost switch like in effect; time limiting activities - screen time in particular; having a big timetable board to limit the impact of transitions; diet - hungry autistic child = unstable low power RBMK, keep them topped up with slow release snacks if they won't eat properly. Do they know they're autistic? My son self-diagnosed aged 6, a truly wonderful day as we were trying to work out how to tell him.


 
Posted : 26/09/2023 11:44 am
Murray reacted
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Its way out of my skillset this stuff but I just want to repeat what was said above.  Issues with food are often about control not the food itself.  When you have little control over your life you use what you can control.  I have seen this in a variety of forms


 
Posted : 26/09/2023 12:12 pm
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physically fight/wrestle (not seen this but have heard it can be evident)?

Weird you should say that - at the martial arts class yesterday (they do a wide mix of all sorts of fighting) they were doing that and he loved it. Conversely, if someone touches him (even just an accidental brush of the arm), he has a meltdown.

Simple things that help loads: fidget & chew toys

He chews gum when he is trying to self-regulate.

Issues with food are often about control not the food itself. When you have little control over your life you use what you can control.

Absolutely – and it's not just food (see my other post about the water bottle - which he continues to refuse to use).


 
Posted : 26/09/2023 12:43 pm

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