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[ExistingonCoffee]

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

DS does do a fair amount to help with things - he does all his own washing including bedding and a fair amount of his own cooking and will sometimes wash up his things. If he sees something has broken in the house he will sometimes try and fix it. He cooperated with our new cleaner first time she came last week letting her go in his bathroom, he has not done that before. If we say ask him to let us in the downstairs bathroom he generally will. DD loves his putting her washing in the tumble drier from the washing machine service.

Today I had one of those moments that highlights how different life caring for DC with additional needs is.

I have a bite mark on my arm. Along with some bruises on my arms unrelated to biting, but still related to caring for DS1. Nothing out of the ordinary for us. DS1 is a biter. Less than he used to be and we are better at managing it/have bite sleeves, but bites still sometimes land.

I went for bloods. I saw an HCA who I hadn’t seen before. When she saw my arms, she gasped. She was flabbergasted at how blasé I was and insisted I wait while she spoke to one of the doctors.

That's hard @ExistingonCoffee . You do minimise, but I can understand why when it's your everyday. Are you ok? I mean, I know you're going to say yes, but are you?

SW phoned today. She's going to ask for 3 hours per day respite, 5 days per week, and ask that it's provided by an agency with skilled workers.

I think I'm in love with my Caseworker at the LA for DD2. She actually got angry when I told her what had happened with DD2. She's going back to the Supported Internship organisation and she's going to talk to them, because 1.5 days in college with people who want to be there and 3 days work experience isn't the same as 5 days per week with people who don't want to be there and get very dysregulated. She also got cross that I don't know what qualifications DD2 is going to leave with in July, so she asked me to copy her in on an email to the school asking for that information and for someone to sit down with DD2 and create a pathway to getting the qualifications she needs to be a veterinary nurse.

@Lougle I hope the respite is agreed quickly and you find someone suitable. Ask if the agency will allow you input into the decision on who to send. If the first person doesn’t work, don’t be afraid to say the agency needs to send someone else. DD2’s school seems to be taking a lot of money, yet doing very little to support DD2.

Yes, I am genuinely OK. The bite didn’t break the skin and was through my jacket rather than directly onto my skin. I just wasn’t quick enough moving my arm away when getting a dysregulated DS1 in the car following an appointment last week.

That sounds more hopeful @Lougle hope they can find a solution that works for you all.

Sorry about the bites @ExistingonCoffee

DH and I have both had so much pain since gardening, I was digging and carrying soil for nearly 4 hours and DH was laying paving slabs. We are not sure if we both have flu as well. DH has been saying he's got flu last week but last week thought it was just gardening. Both taking painkillers every 4 hours. We don't need to do anymore gardening until Sunday though Wednesday have a delivery with 200 litres of compost which will need to move and need to pre clean for cleaner on Tuesday but it's not bad at the moment. Walked to bathroom at 5am in pain to discover DS had taken a bath with muddy floor, and needed to clean all the bathroom. I did it not too bad but did leave floor and did it later. We have about 2 more heavy lifting gardening sessions needed then should be normal gardening. On the plus side its good exercise.

lougle that sounds more supportive. I hope you find someone good for DD1 and that Dd2 finally gets some useful input.

existingoncoffee I sometimes feel that I live in a parallel universe so it must be more so for you.
It is a pity that the people who mismanaged Ds1's appointment last week didn't see the consequences though.

@Lougle 3 hours sounds like a good start. What if the person is wonderful and opens up the world, can you imagine! I hope it happens. Hooray for the caseworker.

@ExistingonCoffee if HPs could see the invisible toll and damage to mind and body they would be highly concerned wouldn’t they. Sorry you are surviving in this reality.

@NoHaudinMaWheest I’m in the other universe nothing is as it should be.

DH asked what I want for Mother’s Day I had to hold my tongue as it’s not going to happen. Your job? I want your job 😆

Tough going here with studying. DD is so tired but so upset at being so tired. She said she is the horse that you take to water and actually wants to drink but can’t and it’s not fair as other horses can’t be made to drink and they are able to drink.

HedgehogsAgree That is tough for DD though she has expressed the dilemma well. My Dd felt similarly at times.

I want a day off for Mothers' Day but I know I won't get it.

Ds is going to the 60th Anniversary shindig of the volunteer organisation he worked with when he was at university. As he won't manage the travel and hotel stay on his own I am going with him and meeting up with a very old friend. So that is sort of half time off.

"DH asked what I want for Mother’s Day I had to hold my tongue as it’s not going to happen. Your job? I want your job 😆"

I'm so with you! It's our wedding anniversary today. DH worked, then looked after DD1. I looked after DD1, the SW, followed by a phonecall with the LA Caseworker, followed by 4 hours of driving lessons.

"Tough going here with studying. DD is so tired but so upset at being so tired. She said she is the horse that you take to water and actually wants to drink but can’t and it’s not fair as other horses can’t be made to drink and they are able to drink."

This. Exactly this. That's why I was so cross when the careers teacher at school said 'it does get a bit squeaky bum at this time of year if they don't want to go to college.' It's nothing to do with 'want' for DD2.

@NoHaudinMaWheest that's so kind of you. I'm glad you're able to get a little break in amongst it.

Now that I've emailed the school, copying in the Caseworker, I have the list of qualifications DD2 will leave with. It's not going to be enough for a level 2 course.

Not a great day here. Ds was home after an hour having lost his cool at college. It’s possibly still meds related but I can’t be sure. His ehcp says “working towards” small group work (from all lessons 1:1). This year he’s in class all day and he just doesn’t seem to be able to cope. They’ve also stopped him working towards any qualifications (we have entry level 3 FS Margate and EL2FS English) in order to get him into this class but it feels like he’s lost the academics and failing on the social. It’s too much on top of increased seizures and meds and he’s developing (for want of a better word) so we are seeing improvement in eating, coordination and understanding. We are to keep him home tomorrow, which will just confuse him because he is so sorry and I think quite confused by it all himself.

Aaaaand we have run out of oil and it’s freezing. Prices are more than double than a month ago so I have ordered half a tank and we will just have to pray it lasts till next term. Happy days.

@ZairWazAnOldLady that all sounds like they're trying to fit DS into their system and not looking at him as an individual. It's so sad that he's sorry for essentially showing that he's struggling.

Ugh have COVID rash, have messaged doctors. Must be what DH has too. I definitely don't want his job.

Ive had to miss the first and only coffee morning for college and parents where we were supposed to learn what is going on (it’s changed hands and much upheaval) and what next for next year. I’m a bit sad about it as I really wanted to see if other parents might be interested in social after school stuff and start building our after college life. I just feel so hopeless about it all. I know everyone always takes their child’s part but I honestly think he can’t help a lot of the things that are causing issues. It sounds weird but it’s not always possible for him to not copy sounds or not repeat phrases (and actually harder when he focuses on it). I think he’s escalating because he has no way of complying.
Always there is the thought “what is he actually getting out of this”. I don’t want to go back to him just at home with me. He still has so much to learn but away from his mother. Dh is great but he works incredibly long hours and isn’t tuned into ds. It’s me or college or me supporting ds at activities.

@Lougle Belated Happy Anniversary!

@Squirrelsandhedgehogs I hope you and DH feel better soon.

@NoHaudinMaWheest enjoy seeing your old friend.

@HedgehogsAgree the adage “A mother's work is never done” is never truer than for a mother who has a child with additional needs.

@ZairWazAnOldLady sorry yesterday was another tricky day. I think you need an early AR of DS’s EHCP. It sounds like it needs improving. Working towards small group work is too vague. It should also be covering academics.

Thanks all. DS1’s dysregulation following last week’s appointment was because he needed bloods, but his port wouldn’t bleed, so it had to be peripheral bloods.

Poor ds1 @ExistingonCoffee and poor you getting chomped. It is often surprising when you suddenly see your normal through someone else’s eyes. I get those moments too though for different challenges. I’m sorry that’s how it is.

Im worried if we review his EHCP they will just say he’s 21 and we don’t think we can do anymore for him. Is that silly or realistic? Part of the problem is he needs so much more than it covers. He needs proper salt and proper support for his language deficit, real understanding of his tics/tourettes/verbal stims/receptive language and real challenging work not repeating times tables etc, and that’s only in addition to learning how to get about on foot, buses, shops, etc etc, and care for himself. An ed psych report would help but only if he was seen in a 1:1 and in a group setting and only if he was having a good day for his epilepsy. He likes the college model for learning and hates things like farm environments but I can’t find any other options. His new tutor is great and motivated but she can’t make him fit in to something he’s not capable of.

@ZairWazAnOldLady if the LA is going to try to cease to maintain, they are likely to try whether you request an early AR or not. They should not cease to maintain just because DS is 21. That would not be lawful. And it would be patently false for the to say there’s nothing more they can do for DS.

If the LA try to cease to maintain, you can appeal and the EHCP must be maintained until the conclusion of any appeal.

Part of the problem is he needs so much more than it covers. He needs proper salt and proper support for his language deficit, real understanding of his tics/tourettes/verbal stims/receptive language and real challenging work not repeating times tables etc, and that’s only in addition to learning how to get about on foot, buses, shops, etc etc, and care for himself.

This is why you need an early review.

A good EP assessment would cover 1:1 and group settings. I think it would be helpful for it to cover a good day epilepsy wise and a bad day. Otherwise you risk the EHCP not being fit for both types of day.

If I was to do it early (and if I leave it to the summer when review is due it will just be a repeat of this year) how do I request EP (and SALT which I think is really needed)? The LD epilepsy nurse has offered to go into college and write something for them about accommodating his epilepsy, as he really is struggling with side effects at each step up, and I think they don’t really get we can’t choose how the meds sit)

Sorry additional question does the ehcp include the direct payments or is that separate, because it’s SS not education?

As part of the AR process, early or not, you can request EP input. At least 2 weeks prior to the meeting, updated advice and information must be circulated. This can include EP, SALT and specialist nurse input. Although unless time is allocated for it in the EHCP, it is unlikely to be a good, full and comprehensive EP/SALT assessment, but you can still request that as part of the AR process.

Personally, I wouldn’t, but you could formally request a reassessment of needs.

Realistically, you are likely to have to appeal when you next have the right of appeal (e.g. following an early review of the EHCP) and seek independent assessments.

We requested EP input for at least a year and one came in on a day when DS was at home (EP said "due to being excluded" but he wasn't, he was ill). So we got an independent EP report.
It actually has decent provision in for the most part but the conclusions about DS' needs are all over the place.

@ZairWazAnOldLady I don't know if I just got lucky, but after annual review, I started mediation and then emailed the LA Caseworker to say 'I'm going to be appealing because the EHCP isn't fit for purpose, would you like to talk?' As a result of that discussion, DD1 has had a SaLT assessment, EP assessment, and OT is booked. So it's definitely worth telling them that you think DS's needs have changed and that he needs new assessments.

Sent an email to solicitor re letter before action. Waiting to hear back.
Trying to decide if we'll send the current draft or the (bound to be useless) final version to schools.

Call with them next week, good to know someone moves at a faster than glacial pace!
If we get the "final" version back in the meantime we can always upgrade to appeal.
I'm thinking through our strategy for schools once we get the final version - send their version, or send our draft but say we are appealing, or send their final version with a list of things they have omitted? To some extent at this point it's better to point out the things in B that they have omitted (because if they have made him seem like the younger, more aggressive version of himself that was in previous EHCPs, they won't take him), rather than F, and to appeal F later once he has a better school place.
One of the schools is the LEA mainstream with RP (LEA say they can't direct them to admit into a lower year), the other three are wholly independent.

Maternity has referred DD2 and DGD to social services over her severe OCD.

@BlueandWhitePorcelain I hope it leads to DD2 receiving more support.

@drspouse the LA should be consulting before the EHCP is finalised. When LAs consult, the version LAs usually send doesn’t include all the proposed amendments parents put forward and they rarely send a full, accurate picture. If you are contacting schools yourself, it is worth providing the up to date evidence and either your response to the amendment notice with your proposed amendments or, if you appeal, the WD when you get to that point. As well as schools you are interested in, it is worth contacting any other schools you think the LA has or may consult now.

To some extent at this point it's better to point out the things in B that they have omitted (because if they have made him seem like the younger, more aggressive version of himself that was in previous EHCPs, they won't take him), rather than F, and to appeal F later once he has a better school place.

The problem with this is the placement named in I is the logical conclusion of B&F. B + F = I. If B &/or F are poor, you risk an inappropriate school that is not your preference being named in section I. If B covers needs that are no longer up to date, F will include provision that is not up to date too, and that can lead to an inappropriate school in I. That is why only appealing section I is risky and people should appeal B&F as well.

Not to mention you would then need to wait for your right of appeal again and then the wait for the hearing itself. If you did this it, could be over 2 years until you manage to sort F.

If your aim is to get a wholly independent SS to admit, then hit them with additional SEP, that is risky. The school will be aware every need in B must have corresponding provision in F. They will see needs don’t have provision and that worries independent schools. The school will be re-consulted if/when it is proposed that the EHCP is subsequently amended and the school may not agree to being named with the additional SEP. They may give notice.

The LA can include education outside of chronological year group in F and then name the school with the RP in I.