wunty
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Post by wunty on Jun 18, 2024 9:47:57 GMT
Drove my wife to an appointment last night and we passed by a park that we used to frequent with the boy. We remarked on it and I casually said "well, at least we don't need to do all that park stuff any more", which in turn managed to make me incredibly sad. He's 14 now. Nearly as tall as me. Where did all that time go
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Post by technoish on Jun 18, 2024 9:56:34 GMT
My wife and I talk about putting the kids in the fridge overnight to slow their growth.
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dam
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Post by dam on Jun 18, 2024 11:14:18 GMT
Drove my wife to an appointment last night and we passed by a park that we used to frequent with the boy. We remarked on it and I casually said "well, at least we don't need to do all that park stuff any more", which in turn managed to make me incredibly sad. He's 14 now. Nearly as tall as me. Where did all that time go We've got one moved out, the middle one will be leaving after the summer, leaving the youngest. Who mainly stays in his room. Once they've gone, and the dogs have passed away....not looking forward to it!
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wunty
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Post by wunty on Jun 18, 2024 11:35:39 GMT
Yeah. I'm already having the odd panic at the fact he's in third year and could conceivably be going to uni somewhere else in three years. Leaving me and my wife once more (plus little doggy at least). It feels like the whole child rearing thing is so fleeting. It feels like no time at all that it was just us two, before we had him. Now all that.. All those phases. Nearly passed already.
I need to shut up I'm depressing myself.
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Vortex
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Post by Vortex on Jun 18, 2024 11:40:45 GMT
On the other hand, ours is potentially a year away from heading to further education and I'm close to buying a countdown clock!
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Post by FlexibleFeline on Jun 18, 2024 11:43:18 GMT
Ah guys...a subject close to my heart and one of the few things that instantly hits me. Mine are 16 and 18 with the older doing his final exams now. I wouldn't say I've begged him to stay but I've let him know he can live with us for as long as he needs. I really want him to be around for another year or two. Of course that's assuming he goes to uni in our home town which may or may not be the case. Conventional wisdom seems to suggest you look forward to the opposite: the kids leaving. I don't. Though I guess I do need to learn to let go. Edit: lol at Vortex's post which I didn't see before writing mine.
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Post by Dougs on Jun 18, 2024 12:15:32 GMT
On the other hand, ours is potentially a year away from heading to further education and I'm close to buying a countdown clock! Whilst I fully echo feline's sentiments - our kids are welcome for as long as they want - I am think I am most looking forward to the eldest getting his own place (ha!) just so I can leave dirty socks and wet towels around his place, and wipe chocolate/crisp covered hands down his sofa.
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Post by FlexibleFeline on Jun 18, 2024 12:41:36 GMT
And what do you plan to do at your eldest's place, once you are free of the rules they've cruelly imposed on you at yours?
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otto
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Post by otto on Jun 18, 2024 13:04:26 GMT
The best years are indeed fleeting and over before you know it. As I mentioned a couple of pages back, one strategy is to have several and stagger them six years apart, giving you a clear run of three decades to enjoy the complete lack of personal time and space and money and respect.
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Post by Dougs on Jun 18, 2024 14:50:07 GMT
And what do you plan to do at your eldest's place, once you are free of the rules they've cruelly imposed on you at yours?
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Post by deekyfun on Jun 19, 2024 10:56:05 GMT
I'm sorry if this isn't the right place to post this, and that it probably feels a bit 'mums-net'y, but I'm really struggling with something and needed to vent somewhere, or at least get a sense-check that I'm not going completely out of my mind to be feeling totally fed up and aggreived by what I'm about to explain below. Also, sorry if this is an overshare - I'll try to avoid going into too much detail where I can. I'll also stick spoilers on so anyone not interested isn't met with a wall of text. I think I've posted elsewhere on the forum about some of our struggles with toilet-training our daughter, but I'll provide some background for context. We started doing this sometime when she was two, ahead of getting her into nursery and school. She is six year old now, just finishing year 1 of school, and is still in pull ups. We've read every bit of advice in terms of general training approachs and followed all of them, flagged up the issue with her GP and got on the waiting lists to be seen by community paediatrics, general paediatrics, and the local school nursing team, alongside seeking advice from charities like ERIC. At the beginning of this year, after multiple years of waiting on those lists, we finally started the process of diagnosis and have since then been going through various test and assessments with many different departments to try and figure out what the cause is.
During this time we have been constantly battling school to try and make sure our daughter is given consistent support for her toileting needs. We flagged up the issues right at the start during Reception, and were initially told that the school could provide no additional support changing her pull-up, and would not be able to help her with any clean-up issues due to their safeguarding rules.
To deal with this we tried putting together an intimate care plan for her, but the school have repeated failed to adhere to it in a variety of different ways. Their focus primarily is getting her in and out of the toilet as quickly as possible, allowing her barely any time on the actual toilet itself, making her dress herself sitting on the dirty wet floor, having her carrying soiled nappy bags around the school corridors to find a bin for them, all the while proudly boasting how fast they've managed to make her go (she never actually goes to the toilet).They treat the care plan as an optional element; because she has no diagnosis, the school don't believe they have any obligation to stick to anything officially.
We also tried (with the schools encouragement) to make sure she is an independent as possible by getting her to be able to do as much of the process herself, as possible, but there are some situations where this is just not feasible - she is on a couple of laxatives as part of the process, and the result of those medications can make things, well, a bit messy sometimes, and we feel like leaving her unclean would not be a very healthy thing to do.
All of the above we have been coping with, but the main thing bothering me right now is that each time we have a meeting with them to discuss these things, they have developed a habit of a) bringing in large numbers of their staff in order to dominate any discussions and b) turned these meeting into a session where they simply berate/critise us for failing to toilet train our daughter.
Yesterday we had one such meeting, which had, in principal, been arranged by us to try and discuss following the care plan, as the medical teams had agreed that the school should be supporting my daughter, so she is able to maintain the routine we have been following, on their guidance. Within the very first minutes of that meeting starting, the Head-teacher interrupted what my wife was trying to say by stating that they could not do anything without my daughters complete medical records proving that she needs help, because they've only got our word for it and for all she knows, we could have just not bothered to do any toilet training. I couldn't really believe that was her baseline assumption - that for 4 years, despite us flagging the issues up, applying to every related medical department in the area, attending multiple volunary course and meetings, and flagging up all these issues around care; her opinion is that we've just not done the work and we're essential trying to con the school into toilet training our daughter for us.
The entire meeting was completely derailed by their team of staff talking over us, saying things that made no sense in the context of our situation and then forcing us to waste time defending ourselves, while trying to avoid getting over-emotional ourselves. We had no time to show the care plan, talk through what we wanted to align on. They would very pointedly tell us that we have previously been difficult or resistent to their suggestions, despite that fact that in almost all cases we have done as they asked, and in the two cases where we said no, it was because their suggestions were stupid. The Head then ended the meeting by asking right in front of us whether the school nursing team had any 'safeguarding' concerns about us.
We also had two medical support people in with us as well (and who actually wanted the meeting in the first place as it happens), but while they have been very supportive and forthright in their agreement with us in one-to-one discussions, they kept pretty quiet when we needed them to speak up for us. The school nurse did at least say no to the question about whether she suspects we were abusing our daughter, thankfully.
So yeah, today I'm just kind of reeling from it all. I couldn't really work because I literally cannot concentrate on anything; I just keep replaying the meeting over and over in my head, getting angry and upset in turn. We've suffered through 4 years of this; of wondering what we're doing wrong, of feeling like parental failures. 4 years of medications, and waiting lists, and talking to endless groups of people who don't seem to read things properly or listen, of reading or watching every bit of contradictory advice there is available to read or watch. 4 years of our own parents trying to interfere, offer 'advice' and and finally realise that maybe they should just back off a bit. 4 years of our relationships being destroyed by the lack of understanding of what to do, the frustrations that come with a complete absence of answers. And they think we don't care?
I'm hoping writing this at least gets it out of my system for a bit. It seems utterly pointless trying to discuss anything with the school - they appear to have adopted the approach that we are completely at fault here. I'm trying to think what we could have done better - what we could change to make life easier for my daughter, because ultimately, that is the reason for all this. We're doing everything we've been advised to do. I'm also trying my best (maybe unsucessfully) not to let emotion get the better of me, at least in terms of our actions towards the school. But it's super hard to get perspective on any of this; we're obviously emotionally invested in trying to do what we think is the right thing, but I'm sure we could have (and have) gotten some things wrong and I haven't got a problem with admitting that. I'm trying to see it from the school's perspective, but I'm honestly probably incapable of not being biased here. I'm wondering if we should be complaining, but am unsure whether it would have any impact or further negative consequences. I'm wondering if we should be looking to move and find a different school, but I have no idea how other schools might feel about our situation. I don't really know what to do, to be honest. Anyway, sorry - that's been my last few days - hope yours are going okay.
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Post by Aunt Alison on Jun 19, 2024 12:10:43 GMT
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Post by deekyfun on Jun 19, 2024 13:56:48 GMT
Thanks, and sorry if it's the wrong place. If someone who has 'the power' can do so, that would be fine by me. Or not, happy eitherway.
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Post by Dougs on Jun 19, 2024 15:20:16 GMT
I'll move the post (and mine) at some point, I firstly just wanted to say how sorry I am that this is happening to you. The school have let you down entirely. I would definitely be complaining to the Board of Governors and the local authority.
Have you applied for an EHCP assessment? Whilst it's often beneficial to do this with the school support, you don't need it. Anyone can do it. It's a hard slog again but personal care is a key element.
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Post by Dougs on Jun 19, 2024 15:22:47 GMT
Moved here now so others might spot it .ore easily.
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Post by deekyfun on Jun 19, 2024 16:49:03 GMT
Moved here now so others might spot it .ore easily. Thank you. When we spoke to the school at the beginning of the year and they started regularly highlight areas where they couldn't support what we were asking for due to staff availability or lack of resources, we asked about an EHCP to fill those gaps. We were told no because even if they got it, it would take time to hire, train etc and they might leave. It felt very much like they didn't want to do it themselves and didn't want to have the funding to mean they had too. Since then we've applied for one ourselves with the help and advice of another support group, but our expectation is it may be rejected on the grounds that her toileting needs arent education related, but that at least it might draw attention to the fact that the school aren't supporting her fully and we could potentially escalate to a complaint. However, I'm unsure how much this will actually help my daughter in the short to medium term, and feels like we've basically burned our bridges at that point. I've spent the afternoon trying to collate everything that has been discussed and fully detail our actions for the last 4 years, because I'm a little worried the Head was laying the foundation for involving social services, since she clearly thinks we're negligent. I'm hoping it at least makes it look a bit suspect if we can prove we were originally the people complaining and these comments about not actually doing any toilet training might be retribution. I know that probably sounds a bit paranoid, but I really have no trust left in those people.
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Post by Dougs on Jun 19, 2024 16:56:06 GMT
I think that's very wise. It's not going to hurt at all.
Re the ECHP, appeal, appeal, appeal! Even if it's relatively temporary support, it's still support she needs.
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Ulythium
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Post by Ulythium on Jun 19, 2024 17:00:03 GMT
I'm afraid I can offer nothing constructive, deekyfun, but I will echo Dougs' initial comment - I'm really sorry this is happening to you, and I wish you all the best.
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Post by deekyfun on Jun 19, 2024 17:09:20 GMT
I really appreciate it, thanks. I wouldn't have mentioned it at all, but I got so upset about it I just needed to put it all out. Its actually been very hard talking to closer friends and family about this as it takes such a lot of explanation and our families always have to put in their 10 cents.
We've spent so much time trying to get through this and fighting wall after wall of what feels like systemic apathy towards our situation, that moving from that to now being attacked for the affront of having a child who has an unresolved medical issue, it starts feeling like I'm going a bit mad.
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Zuluhero
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Post by Zuluhero on Jun 19, 2024 18:54:35 GMT
Yeah must be tough. Have you gone back to the GP to talk about these issues, as that laxative dose might need adjusting if it's causing incontinence?
When my daughter was on movicol for chronic constipation in her early school years, we had to adjust it quite a bit. While she was toilet trained, she still had accidents from time to time.
Our biggest battle with the school was getting them to let her keep a drink with it mixed in in her class so she could sip it throughout the day.
Different teachers seemed to get different memos so we were constantly going in to remind them. I'm glad those battles are over.
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Post by deekyfun on Jun 19, 2024 19:08:50 GMT
Yeah must be tough. Have you gone back to the GP to talk about these issues, as that laxative dose might need adjusting if it's causing incontinence? Yeah, we have and we have to change it quite a bit as well, but so far none of the changes have removed a side effect that is causing quite a lot of problems and no one so far (GP, Paediatrician) is certain how to resolve it. Information on it is extremely inconsistent as it feels like basically everything is a sign of constipation and we never know what adjustments to make. She's also on Sodium Picosulphate now, which is an additional complication and when we have queries the consultant who set it up is basically never available to contact. We think we're going to end up trying a disimpaction in the summer, which will be fun.
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Zuluhero
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Post by Zuluhero on Jun 19, 2024 19:20:29 GMT
Oof that's the strong one they use for things like colonoscopies, poor thing.
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Post by pierrepressure on Jun 20, 2024 11:39:45 GMT
I dont have any advice Deeky, I just wanted to show my support. I have had two children with bowel movement problems and were on movicol for a good few years and the youngest still is, you can feel helpless at times.
Our youngest also has giggle incontinence where he will literally piss himself if he finds something really funny. He's even shat himself before! I'm starting to panic as he's nearly 6 and conscious he's now getting to an age where kids will start making fun but both his mum and doctors have said its just a phase.
On an unrelated note, I know I'm late but I had a lovely Father's Day where I didn't lift a finger, had a lamb roast dinner cooked for me and the youngest 'bought' me Dragons Dogma 2. He also spent the whole day creating Father's Day cards for me with various characters on, it was very sweet how excited he was for me the whole day.
My arsehole 16 year old grunted Happy Birthday (not a typo and it wasn't my birthday) at about two in the afternoon.
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Post by deekyfun on Jun 20, 2024 20:27:32 GMT
Thanks pierrepressure, I appreciate it, and I wish the best for your situation there too. We had a catch up with the lady from Sendias who was in the meeting. We decided to get a sense-check from her about whether we were right to be feeling a bit attacked, and she agreed with our assessment. She thinks they were on the defensive as they probably aren't happy being scrutinised via the EHCP application we put in (I would say they were already behaving like this prior to our submission, and, of anything, their behaviour was the reason we decided to do it without them), and for some reason have decided our situation is not medical in nature despite all the medical referrals, notes and history demonstrating otherwise. They just think it's us, and I have no idea why. The lady also helped us with planning the next steps, so I'm feeling a little better after that and a few days distance. It's still a fraught situation, and we will definitely find ourself going through it again, but we're just going to continue to keep notes on everything, now request all information is provided written down so they can't be slippery, and try to find a way to more effectively communicate against their attempts to undermine us (we're really no good in these meetings). Its an exhausting prospect, but I guess we have no choice but to keep fighting. To be honest, at the moment even if everything was somehow to be resolved, I'm still feeling that someone needs to complain about this staff and their approach in this situation, as it doesn't seem fair to any family going through this stuff to have to risk this kind of thing. It may sound vindictive, or even fruitless, but I just don't think these people should be doing this work, or at least need to recognise how damaging their methods are.
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otto
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Post by otto on Jun 22, 2024 3:04:02 GMT
I hope this doesn’t come across as discouraging, rather the opposite, just to say that when it comes to securing that all-important EHCP it takes incredible patience, energy, and deep pockets. Some local authorities (guess which colour) will contest it on principle until you take them to court, and then cave only days before it goes to full trial, meaning you’ve already paid for barristers and expert witnesses. Ask me how I know. Then, even when the EHCP is granted, they will continue to be obstructive and non-responsive unless prodded by legal threats. My disabled daughter, now 23, was first statemented in 2009. She has a detailed documented medical diagnosis and recognition of her disability by multiple professionals. We’ve been trying to get her into supported living as an adult for years. A couple of weeks ago Bromley social services dismissed her (again) saying she has “learning difficulties but not disabilities” - when challenged, they said (said, not in writing) that they hadn’t even read her diagnosis. We’re waiting to get hard evidence in writing so we can take them to court… AGAIN.
The system is desperately under resourced and Councils need aggressive chasing through the courts to carry out their responsibilities. This means only the families with the deepest pockets and spikiest elbows get the help they need and are entitled to by law. I hope Labour will make things better but don’t for God’s sake hold your breath.
But there are many others out there in the same boat, there are support groups, specialist charities, and specialist law firms.
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Post by deekyfun on Jun 22, 2024 8:12:48 GMT
We're relatively new to the EHCP side of things, but every person I've talked to who has had dealings with applying for and implementing one seem to have had to have an frightening amount of determination to keep pushing in the face of a whole lot of frustrating nonsense. I have a lot of admiration for those who have managed to fight to secure the supported needed, but it is sad that they have to.
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Post by simple on Jun 23, 2024 13:12:39 GMT
Oh man, sorry to read all this Deeky. I can’t offer anything but sympathy but I hope things get sorted soon. One of my colleagues had a similar experience with their autistic son being treated as a problem rather than supported by his school. Feels like olde timey attitudes of some staff coupled with a decade and a half of budget squeezing has created a perfect storm in schools where children need additional support.
Here in House Simple the boy has got himself a crusty yellow bout of impetigo. He picked coldsores from nursery a couple of years ago so to start with we thought his manky lip was just another round of that but it was the biggest and scabbiest we’d seen in a long time. Then a second opened up in the middle of his chin. First spotted them maybe Wednesday or Thursday but they didn’t seem to be calming down any and looked real gross compared to normal so went for a consultation with the pharmacist at Boots this morning. The door had barely closed and she was like “so you’re here about his impetigo, when did you first spot it?”
Got some cream that he hates for the next week and instructions to keep him off school for at least two days to give it time to get working. I work from home Monday and Tuesday so childcare won’t be a problem, being housebound in this weather might get old fast though.
Any tips to help him out or do we just ride it out while applying the cream and washing everything he’s touched?
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otto
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Post by otto on Jun 24, 2024 12:58:13 GMT
One for the SEN parents here, I was meeting my daughter at the shops, when I phoned her to ask her where she was she told me she was in the sex shop. WTF??? Where?? "THE SEX SHOP." [Consternation] Whereabouts? I'll come and find you. "It's next to the Cafe Nero."
...Oh you mean CEX
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drakesmoke
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We gotta talk about that ride kid. Next clue to the case!
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Post by drakesmoke on Jun 24, 2024 16:18:11 GMT
One for the SEN parents here, I was meeting my daughter at the shops, when I phoned her to ask her where she was she told me she was in the sex shop. WTF??? Where?? "THE SEX SHOP." [Consternation] Whereabouts? I'll come and find you. "It's next to the Cafe Nero." ...Oh you mean CEX I believe if you ask CEX themselves they would tell you it is, in fact, pronounced that way. Kind of ironic as it smells like male virginity.
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Post by freddiemercurystwin on Jun 24, 2024 17:20:52 GMT
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