The Goose & Carrot Pub

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A thread for all who have DC with SN. The thread is deleted in 90 days and doesn’t show in active. The season is changing and the bar is well stocked.

@drspouse sorry DS had another seizure that has left him hurt. I hope you aren’t waiting too long for neurologist.

@Lougle although DS1 has speech sound disorders, it is mainly the functional use of language he doesn’t have. He has difficulties with understanding too and a lot goes over his head, but he has more understanding of words than his verbal ability indicates, he just he can’t put it into practice in everyday life. The opposite of your DD1 in some ways. Language, and speech in particular, is one of the areas DS1 has regressed in.

As a young child, it was always put down to other factors. For example, I was repeatedly told why would DS1 speak if DS2, who was more dominant, will speak for him. It was the same with crawling/walking. Why go to the effort of crawling to X if he can cry and DS2 will bring him the ball/blanket/whatever? Life was hard then, but if I knew then what I know now I wouldn’t be so easily brushed off.

He has Maths and statistics GCSEs. He did incredibly well. I’m not sure the 3 he is sitting in this series are going/will go so well. He has a very spiky profile but doesn’t have a low IQ. He just can’t use his intelligence in IRL. Because he doesn’t have a low IQ, the local service won’t diagnose an LD. Despite the fact they recognise his functioning is extremely limited, he can’t use his IQ in everyday life, and it being increasingly accepted LD is about more than IQ. It doesn’t matter now, but I worry the adult mental health service is going to be a disaster because they aren’t equipped to handle the level of complex needs he has.

It's all bizarre, isn't it? Luckily, DD1's psychologist told the team that it was stupid to be debating the level of DD1's LD when it was clear that she'd have a lifelong need for services.

@drspouse thanks, there are a lot of Williams Syndrome features but the FISH was negative, I think.

DS maths tutor has asked if a new tutor can come round to observe "how to get the best out of kids with ADHD and high maths ability". Did I mention we love our maths tutor?
I tried a harder level of Anton English with DS yesterday and we hit up against his old problem - he doesn't think you need to read a comprehension passage to answer the questions, he thinks you just need to guess. We will keep trying, I'm not sure if for this type of question (as opposed to facts/SPAG) an electronic format is good as he can skip the reading too easily but it may be worth using this and combining.
For writing we are using Storybird as the interface and Pobble 365 for prompts. We're using the easiest level of Pobble prompts and only asking him to answer one question and use 5-6 words from the word bank but both of these are improving his writing already which is nice. We are using fiction prompts but Pobble has non-fiction too so we will probably move on to those at some point.

Have you experimented with an audio player? I wonder if he would take in more if it was read out to him while he fidgeted with something? It might have to be at a higher speed though - I can't bear playing things in single speed and find 1.5x better.

The comprehension passages on Anton have the option to read to you, and I've been encouraging him to use that, but I also know that the research shows reading comprehension is better in ADHD if you read it rather than listen to it (the hurdle to reading being, as you say, that it's too slow for the ADHD brain!)

Well review is done such as it was. None of the outcomes have been achieved (sorry maybe one and I did that), some of them have been partially achieved (both at home and in college). They say there is no suitable provision for him either in college or that they can see working in county. They think the outcomes could be achieved by adult social care and he could transfer to adult services. So they either cease EHC and we transfer, they cease and we don’t (?), or they leave it open with no setting named but they aren’t sure the LA can allow that.

Do you agree? I was quite taken back by number of settings I found in your general area when I Googled. Are they really saying that they don't think any of them would work?

There’s one we’ve been at before which is possible. Do we want that though? I’m not sure we do. They didn’t seem to think he could go further (which definitely isn’t correct), but there wasn’t anything they were suggesting really.

I think it's up to you, but a lot of the stuff that's in social care is exactly how education looks, he'll just pay for it. I'm actually feeling really cross. Are they saying he can't learn to walk at the side of the road, to go shopping, to plan food, to do gardening, or take a photo, etc? You describe him as someone who is always changing and developing, so why can't they see it?

@Zeonlywayisup if there is no suitable placement is EOTIC a choice (where DS doesn’t pay) or is that a whole other battle and not an option?

Are they saying he can't learn to walk at the side of the road, to go shopping, to plan food, to do gardening, or take a photo, etc?
I think the vibe was that wasn’t education @Lougle (😱) and that life skills were social care.

EOTIC wasn’t discussed at all. I described what he was doing at home and they said it sounded like he’d make the most progress with me teaching him. I said I didn’t want to be his teacher I wanted to be his mum.

I’m not convinced they knew what was possible instead of college. Perhaps all the parents just give up by this stage?

Sorry that sounds like a useless review @Zeonlywayisup

Hope you feel better soon @BlueandWhitePorcelain

Hope your DS gets better @drspouse

Glad the care company were better @Lougle

DH was sad after his Mum and told him to phone her sister and he did but she was already on the phone to her. At least DH has managed to explain to his aunt what the situation is and she was fine and will try to calm his Mum. DH was better after that and today I told him to phone an old colleague who works for himself and he was chatting to him for an hour.

Other than that its all about sheds here. Well apparently the posh shed is an office and DH wants it to be an office. It'll be most like a summerhouse but without the full length windows and like a small thatched cottage with a door and an openable window, electrics and insulation and painted inside. We had 2 designs through but I had to go back with changes as want the front of the roof facing the garden so you can see as much thatch as possible. Also they had ceiling height at 2.5 metres with eaves at 1.6 metres as I had queried planning but we will need planning anyway so we are going for the normal 3 metre height. DS is tall, not that he is often vertical in the shed but he's 6 foot or so. Not exactly sure but he's a lot taller than me and the tallest of all of us. So they are coming back with a price. The size they are doing is almost 7 foot by 10 foot which is the maximum and will take a couple of plants out my honeysuckle and another plant which DH calls the one with the beautiful orange flowers but its not too bad and will give more space inside.

Have ordered 2 beach hut style mini tool stores which we will paint in DHs first week of voluntary redundancy which will store all the silkies stuff, our lawn mower and garden tools. It'll take pretty much all our things out of the thatched shed which is better so its all for DS and hopefully stops mud in there, there's hardly any mud gets in the shed as DS is very house proud for his shed and takes shoes out and sweeps with a dustpan and brush but new shed will have a posh wooden floor so want to be careful and also make it DSs. Still got colds here but not too bad.

@Lougle a very sensible psychologist. Do you find DD1’s communication deteriorates when she is tired? I think fatigue plays a part in DS1’s communication difficulties.

@drspouse if reading on a screen, would DS use an on-screen reading ruler? If reading on paper, would highlighting the words as he reads them help?

@Zeonlywayisup oersonally, I wouldn’t be allowing the LA to cease to maintain. If they try to, I would appeal and it has to be maintained until the conclusion of any appeal.

You might have to appeal, but DS can receive far more via education than is likely via social care, and as Lougle said, social care provision is subject to financial assessment. Educational provision is also easier to enforce.

Everything Lougle listed belongs in section F of the EHCP. Have a read about preparation for adulthood provision. Also, social care provision that educates or trains is actually deemed to be special educational provision.

The LA won’t suggest anything. Not suggesting things saves them money.

You aren’t limited to placements in your LA.

or they leave it open with no setting named but they aren’t sure the LA can allow that.

Err, yes they can. Section I can be blank and they can provide EOTAS/EOTIS/C. DS1&3 have section I blank.

@Zeonlywayisup they are gaslighting you. Or, if you want to be generous, they have been gaslit and are passing it down the bus.

Look at the provision at all the colleges I have sent you. It's all that stuff. All the stuff that you know he needs, and they've decided you can teach him. No. You're his mother. His rock. You need to be celebrating his education with him, not being his education. How can he show you his new skills proudly if you're the one that gave them to him. He needs to be able to say 'look what I learned!', however he expresses it.

Did you have a LA representative there? Personally, and I accept that I'm a bit incendiary, if you didn't, I would write to them, copying in the college, to update them on your views after AR, and that you disagree with the college's judgement that education is finished. If they were there, I would email them to say that, having reflected, you weren't happy with the direction the meeting took, but you didn't have the opportunity to say so during the meeting, but to clarify your position, you think x, y, z. Either way, make it clear that you fully expect the EHCP to be maintained next year and that you expect suitable educational provision.

@scoopofmintchocchipicecream yes, fatigue and pain hugely impact DD1's communication both in quantity and quality. When she's tired and in pain she uses lots of hyperbole and it's almost impossible to decipher what she's actually trying to convey.

I wonder if you all have more patience than me. I find it so difficult to cope with the relentless demands about what's happening next, what's for breakfast/lunch/dinner...it doesn't matter what I say - if I haven't said what's for dinner, I get 'What's for dinner?' and if I have, I get "it's x for dinner, isn't it?'.

I can't even take a different route home without her saying 'where are we going now?', even though I use a few routes routinely.

She's monitoring phone calls, emails, post, conversations.

I can't breathe.

lougle that would test anyone's patience and feels very claustrophobic even reading about it. Ds is a bit like that in the morning as he finds the whole getting up and ready for the day so difficult and I find that hard enough but he then goes off to work. I am not sure how I would cope with it all day.

I have a fatiguing condition and when it is bad I am virtually unable to speak even although I don't normally have any speech or language difficulties so I am not surprised that fatigue makes communication so much more difficult for DD1 and Scoopofmintchocchipicecream's Ds1.

@Lougle we get a lot of asking the same questions or telling us the same things are happening/have happened again and again. It's partly inflexibility leading to inability to understand that conversational conventions mean you don't do that, and partly anxiety. We quite often find ourselves in "you've said that, I'm not answering again" mode.
@scoopofmintchocchipicecream he's using a browser on an old laptop to do some of his reading and I can see there are extensions for the browser that would highlight words - good call - we'll give it a go.

@Lougle no just senco and teacher. Senco is leaving in 2 weeks so needs my decision on if EHC is to continue or not asap so she can say that. I suggested that what she was writing was what college thought not my take on it, but that I would call her in a few days once I’d thought about what I said. The general vibe was I needed to come to terms with the fact he was moving forward to adult care. I rarely need to come to terms with anything in that way because I’m already at the pit face. There’s no “blindness” to his difficulties and frankly never has been. It is a common trope though.

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Ds loses language to communicate with when tired or upset. It’s VERY marked as he has such a huge deficit so if he disengages his conscious work to overcome it he’s left with almost nothing. We drop from 5/6 year old to 2 year old communication. That stresses him even more because he thinks you are somehow making it harder for him.

@Lougle you are describing ds to a T when he is unhappy/stressed, right down to the route changes and endless reassurance over what’s happening It is claustrophobic and it is hard to be kind about. You can though. Just like you can do all the other grotty bits. I know it doesn’t feel like it will ever end but I find it goes in waves and that particular feeling and level of constant support is a sign that change is needed.

By the way, does anyone have a good link for looking for specialist colleges and/or specialist schools that do post 16?
We feel like it's been such a mess trying to get anything in place for KS4 and has taken so long, perhaps we should be looking now for post 16.
We will also look at local MS colleges (as I'm sure he'd still need a 1:1) but he may not have the qualifications or may not be up to coping with MS college even with support.
We generally feel that he would be better having more school, and I know that residential colleges tend to be for LDs, but it's worth looking at everything I feel.

I only know of Natspec - they represent their members, specialist colleges for LD though.

https://natspec.org.uk/

Or your LA site should have their local offer, but won't have independents on there.

Google your area and post-16, or ADHD, or dyslexia, etc.

@Tulipandmagnolia the shed sounds wonderful. We went to see an ex-display garden room today which was reduced by £11,000 if you dismantle it and remove it/relocate it yourself. The spec was great, with insulation, consumer unit, sockets, double glazing, etc. In the end, though, I decided that it sacrificed too much internal space because of the way they had built a corner step that occupied 2'x4', the walls being 6 inches thick, and the addition of a funny little alcove under the e window. All in all, I think it lost ⅓ of the internal floor space because of the construction. Plus it has a fibreglass roof, so we would either have had to saw it apart and reconnect it, or have 5 people to lift it and move it.

@drspouse as well as Natspec, you can search for post 16 placements here. Under the establishment type, some will be under special schools and some under the special post 16 institutions. Don’t use the age range and type of needs filters because some independent special schools haven’t fully reported their information, so it misses some. There are residential post 16 placements who aren’t LD placements.

@Lougle it is exhausting. We have an incredibly detailed timetable on the wall. It includes who, what, when, where, etc. It doesn’t stop the questions, but it reduces them, especially from DS2, who I can direct to the timetable rather than answer his question. DSs need to know exactly what is happening and when and need an extreme amount of structure and routine. DS1 gets upset if we can’t go our usual way to somewhere or can’t park in our normal car park.

I'm really struggling to find provision for DD2 for September. I look across the country and the 16-25 provision isn't bad in places, but in our county there's barely anything unless you want to do life skills. She needs something where the life skills are a stealthy add on to the animal care.

Anyone see the short piece on the one show just now? Made it sound like the government proposed changes to send educational provision is all a rosy change… I spent nearly 2hrs last night typing out a response to the government consultation and still didn’t answer all the questions despite using cribbs from a few online advocates. At least I tried.

Im also looking into post 16 providers and I’m so uncertain whether to steer DD2 back into mainstream when I really think she needs another year to “try & land” and trying at 17 would be better, as she’s a late Aug born and it’s still evident she needs longer to emotionally / socially develop then layer in the Audhd it’s tricky . I’m fully aware at the LA review meeting in June they want me to indicate the direction she’s going. She is on a glide path for 5-6 gcse level qualifications which does mean in theory she could access A levels in reality I suspect she could do one or two but not three at the same time. Mainly it’s A level maths she would like to do and some kind of digital media BTEC could work but only if it’s a small cohort. A local 6th form do have class sizes of 10-15 but it’s very “school like” & they don’t do the digital media whereas a local college does but it’s huge and I think she would struggle socially.

Well done @RedRegular on the weight loss I’ve stayed on the jabs as the side impact of much reduced inflammation in my joints has.
been life changing even before the weight loss kicked in. Some of it is your body releasing oestrogen stores in fat cells. It’s a commonly reported positive side efffect plus my brain fog really improved too. I quietly smiled in sympathy at the endless printing and scaffolding you mentioned. That’s my Sunday afternoon job when I plan the week ahead.

@Zeonlywayisup Im angry for you as it does sound like they are hoping your just go away and give up the EHCP. I hope you can find a way through this next tricky stage to get better support for DS.

Arrh yes also nodding at the suffocating endless questions when the anxiety is sky high. It’s exhausting but I’ve been lucky that the adhd meds have really taken it down about 50% since DD2 started on them. I can now leave her alone when I walk the dog in the morning which is heaven. I hope you can get a break soon from the intensity or share the load with someone else.