The Goose and Carrot Pub Thread

Yes, I forgot about that. I am not trying to play top trumps; but the head of therapy at the first specialist speech and language school told me DD1 was one of the most profoundly impaired children, she’d seen in over 40 years in practice!

Nice to have to find us @Fififizz , welcome. I have 3 teen/young adult girls.

Welcome @Fififizz , how nice to see a new face.

Hello, I’m popping on to join you if I may. I’m struggling massively with burnout currently and feeling so down about things. Just as I think it’s going ok ish for our situation something happens and it all falls apart again. I have a ND teen and although I shouldn’t use the terminology would likely be described as ‘high functioning’, I’m likely undiagnosed ND and DF is too. Thanks for letting me share.

lougle well done to Dd2 for staying the course today.

I didn't have imposter syndrome with DS as his OCD was so obvious. When he was assessed by the Maudsley team he was at the top of the scale they use to judge severity of OCD. Once he was admitted and they saw what he was really like the psychologist said that she thought they had underestimated his severity. So he was, quite literally, off the scale.
With Dd I was constantly second guessing myself. Not helped by the vibes I was getting from CAMHS which were confirmed when I got access to her records which said that a complex kind of FII was suspected. Fortunately GOSH didn't agree so that was dropped. I haven't watched Love you to Death. The trailer was challenging enough.

DD2 was talking about a boy in class who kept talking, and how the teacher had asked for anyone but Steven to answer her question. DD2 said that she repeated pretty much verbatim what the boy had said (because it was the only correct answer), the teacher had thanked her, and the boy muttered that he had said that. DD1 responded by talking about a judge in a court case, who had suggested that the defendant's mouth be gaffer taped because he kept interrupting. She said, very sagely, "I think he got quite a lot of neglectful reviews for that and got thrown off the case..."

🤣🤣🤣🤣at “looks a bit funny”

I long to hear your dd1 chat @Lougle . She’s light years ahead of ds1 I think but there is a familiarity to much of what she does say. I used to hang on the words of those with experience of Asperger’s because it gave me a clearer picture of ds. One psych once told me that she thought Asperger’s with language disorder might be the best fit for ds1. I pointed out that surely that was HFA, and she said yes she agreed but still….

they are all little puzzles

Maybe I'm unusual in that I spend my whole time being told that DD1 is fine until they get to know her and say 'Oh....'.

Our Psychologist is the only one that got it immediately. Every so often she tells me that it's a good thing for DD1 that she 'looks a bit funny' 🤣

Salt told us once that ds had the most severe language disorder she’d dealt with in the ten years she’d been assessing for our region. I was surprised. I’ve had professionals cry at our situation. I don’t like it. I know they are human too but it upsets me.

we’ve had some really fantastic care from the community dentist, and although ds’s meds are difficult to access his GP and the team there are very kind.

@Lougle No, I don’t get imposter syndrome. DH and I were reminiscing yesterday how DD1’s SW and DD2’s CPN came to do a joint carer’s assessment for me. They only asked me what my life was like - they were both in tears!

Our GP was always suggesting to DH, he have counselling (when actually he had blocked coronary arteries), so one day, he gave in and agreed. The counsellor rang him up and asked what his life was like. He just told her matter of factly - she was in tears!

DD2 has said the same thing about the HCPs, except psychiatrists at the MH trust!

We had the head of St Elizabeth’s tell us, DD1 had the most complex epilepsy he’d seen in over 20 years; and the epilepsy nurse at St Piers said DD1 had the most severe epilepsy there!

DD2’s DBT counsellor told her, she had the most severe BPD on his case load, and the textbooks could have been written about her!

@Lougle I totally agree on the meds flow. It’s exhausting and saps the life out of me. Well done dd2. You are quite right, save that 20% for winter lurgies.

@LathkillDale I don’t understand the funding enough really but I often think I’m shirking by not engaging and pushing for improvement. I’m not a fan of the no decisions unless we are part of it vibe really as I never think ds is well represented in those discussions BUT I often think if we provided a neatly tied up and presented package that saved people from having quite such abysmal support and transparently saved money someone might go for it. (especially if we let it be their idea🤣🤣🤣)

I told our MP that not long ago, at a local carers’ meeting. She said, she’d bring it up with the LA; she wasn’t at all interested though, when I said carers can’t be expected to give up a full time job, and live on fresh air (ie carers’ allowance) to care for a relative!

I'd settle for a smooth supply of meds right now. I emailed the LD team 4 days ago to remind the psych about DD1's Concerta. I've tried phoning the LD team. I've tried phoning the LD nurse. She runs out on Friday.

DD2 did well yesterday, although she was exhausted. In bed by 7pm and slept until 8.15am, when we woke her. She had a panic and was sobbing that she couldn't do it, but I got her there. She messaged at 11.45 to say that she wanted to come home. She was really hot and they are handling insects later, which is a bit boring. I offered her 3 stars to stay, so she's giving it a go. She needs overall attendance of 80% this year to be able to progress and if she gets ill that will soon eat that up, so she really needs to try to stay.

@LathkillDale thats exactly the sort of thinking we need planning support.

Its SO frustrating that things could be better for whole families, and cost less.

@Zzzzzs If we could get respite two nights a week, where we live, DD1 wouldn’t be in a care home costing over £250k pa! However, the LA has closed half the respite centres in its infinite wisdom; and they wouldn’t have been able to cope with her epilepsy anyway. That’s three of us in our small town, with DC costing £750k I know of - they could run a respite medical centre for that a year, for far more than 3 people!

Well I’ve sent the forms back so ds can start his new meds once that’s through. He had a terror yesterday and ran straight out of the house. (Into the garden but still!). I’m rethinking how we manage things a bit.

Shall we talk about fantasy support and how things could look if we chose how the money was spent? I’m so tired of the RL set up. It’s just such a waste of time in so many ways.

I've just read the update on the case of FHR. The judge has ordered withdrawal of food and fluids. Such sadness in these situations.

^https://www.judiciary.uk/wp-content/uploads/2026/08/COP-FHR-Final-Approved-Judgment-for-hand-down.pdf^

I was glad to see that the judge has included that he should receive his palliative care at home.

@Zzzzzs it is a knife that twists, isn't it? None of us would make the choices we make daily willingly. It would be so nice to be able to make choices that don't sacrifice one child over the other.

In terms of Skylight, I'm not trying to sell it, honestly! You might like to try Mango - it's got a free trial and can use any device as the display.

@Lougle honestly it makes me cry when my dc who does the whole my life is ruined by ds rant lets loose. Worse because much of it is untrue and … well.. I did my best in a very tough situation. It hurts that there is no recognition of how much we do do to try to limit the impact on all. I think there’s a lot on tik tok etc about glass children etc and teens are easily lead.

My worry is the skylight is something I could do with iPad which we already have. I’m also distracted by a Dec for learning languages which might be fun. We actually have a big chunk because ds has missed so many activities this year and summer is often cheaper for us anyway. So it’s not that I can’t buy them more what’s the best use of the cash.

@Violasilkie I think that's partly true but I think also that DD1 creates a demand in DD3's mind because she's either upset that she's not getting something she wants, asking for something, or trying to be really 'good' so she's asking DD3 if she's ok, telling her that she's just popping into the loo, or telling her that she hopes she has had or will have a good day, etc.

@roaringdragon yes, I can imagine that there are so many competing demands on funds. We paid for the hall Skylight because I really wasn't sure if it would just be an expensive screen, but I've used PIP to buy DD1's and DD2's.

@roaringdragon it is funny, afterwards. Today she came to me with a somber voice and said "Remove stars". When I asked why, she pointed to a pan of salted caramel and said "I couldn't resist the impulse 🥺" When I looked in the pan, there was a neat gouge from a spoon 🤣🤣