The Goose and Carrot Pub Thread

[roaringdragon]

Everyone is welcome, and the thread disappears after 90 days.

Thank you for the last thread @lougle. I hope the doctor was helpful and DD2 isn’t feeling too rubbish this morning.

DS1 has used the last of his EOTAS hours today. There will be at least a few weeks before the EHCP is finalised and funding restarts. He will hopefully have his operation during that time, but it is still going to feel like a long time without that provision.

The change I would make is not having to chase every step of the way. For people to do what they should do and do what they say they are going to do. Except for the current gap in provision, we have a lot of support but only because we relentlessly advocate for DC and enforce their rights. It shouldn't be necessary to do that constantly.

@Lougle I’m glad yesterday went well. I hope DD2 manages to stay and you sort DD1’s medication.

This month is going to be an expensive month. DH will have to take some unpaid leave. Thankfully, his employer is understanding because he only has 1 week of parental leave left and has already used his 5 days of carer leave this year. Even though we decided it wasn’t continuing to fund all DS1’s package was feasible, we are going to fund a couple of CP and OT sessions to try to minimise the slide backwards.

We have a ball pit. The type meant for toddlers. DS1 was playing in it this morning. He and DD2 enjoyed a good hour where DS1 threw the balls out and DD2 collected the balls and put them back in the pit. Lots of laughing and giggling from both. DS1 struggles with interacting with siblings and is mostly in his own world, so it was lovely to watch. Very good for DS1’s motor skills too.

@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!

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.

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' 🤣

@Lougle I think it is your DD1’s deceptive verbal ability that lulls professionals into believe she is more able than she is.

🤣🤣🤣🤣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

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..."

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.

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.

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

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

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!

Welcome @Fififizz.

@Lougle conversations with your DD1 are brilliant. It is a shame gaffer tape isn’t seen as acceptable. Sometimes I wish I could use it.

@Lougle @Zzzzzs

Thanks for the welcome. @roaringdragon mentioned this thread. I think she has helped me in previous posts and under previous names. I’m now in another phase of SEN education and parenting and trying to find my feet and energy to keep fighting for what we need/are entitled to.

I’ll be honest @LathkillDale I didn’t believe her and ds’s language has since developed atypically but he can understand and be understood. I think it’s a dance they play like the moment people start talking about limited resources or “if we do it for one, we’d have to do it for everyone”. It’s not meant, but it soothes something that hurts them very deeply when they get a glimpse of what it’s really like to be inside ds’s disability. They can’t help so they offer a descriptor that they think might make it easier. Of course it doesn’t hit like that (or at least not for me). Nobody wants to win the “worst case” race.

@Fififizz I have! I’m the one who emailed you the PfA document. I regularly name change.

@roaringdragon

I thought it was you. I tried to keep it to DC but slipped a few times. After all I’ve been through I’m paranoid about the LA or others snooping. I appreciate your replies. Thank you.

@roaringdragon DS1 having fun in the ball pit is a ray of sunshine. Made me smile.

@Fififizz come on in, it’s all knackering. What’s happening with your exhaustion? Is it a steady state of it all being a bit much or have you tipped over due to a particular event?

My tiger didn’t roar. To think I couldn’t wear make up or jewellery or a change of outfit or leave the house 4 years ago and now the ship is so much steadier I’m eating cake abroad and finally have enough brain power to read what I want to again. Circe, Madeline Miller, if anyone wants a recommendation.

@PurringTiger you are abroad!? Enjoy. You have come along way those long days and nights sat on DD’s bedroom floor.

@Fififizz I NC regularly now because several years ago now, someone used my posts on MN to upset DD2. MNHQ kindly deleted all my posts under the name I was using at the time. I know my LA has previously read my posts on MN. That makes me sound paranoid but it’s true.

@roaringdragon yes I’m home on Friday. Ikwym about people reading posts. It beggars belief that people would leverage posts on what essentially is a support group for vulnerable children’s/YPs parents/carers. Shame on them.

@PurringTiger I'm so thrilled for you.

@roaringdragon conversations with DD1 are baffling and surprising. One minute we're trying to unpack the most basic concepts, the next she's giving us a stream of detailed facts about the most obscure subject.

The prescription is, apparently, sorted. I'll check with the chemist tomorrow.

Anyway, hold on to your hats because I've got a wild tale you won't believe:

Firstly, DD2 has been talking in class. She said that nobody else will talk (except the poor lad that does nothing else) and so she feels she really has to answer the questions. @Fififizz to catch you up, DD2 left mainstream education in 2022 and has been in a couple of special schools since. She has largely ignored other pupils until now and found it very hard to speak to her staff in the 1:1 setting she was at.

Secondly, DD2 sent an email to her tutor, just asking me to proof read, because she saw the rule about removing earrings but has fresh cartilage piercings. She was deferent but assertive, offering compromises that would work for them both. The tutor has confirmed today that she can keep her earrings in.

She was beaming when she told me that she had held an African Land Snail (the big guy we met on the taster day died, RIP), a hissing cockroach, and a stick insect. She was apparently the only one in the class that had remembered her overalls. I'm so glad I found the ones at Groomers that she can tolerate.

I'm bursting with pride.

@Lougle could not hold my hat!!! It’s off to DD2 wonderful wonderful news.

@Lougle well done DD2. What a positive start. You wouldn’t believe it was the same DD. Definitely earned those 3 stars today.

@PurringTiger lovely. Savour those full night’s sleep.

@Lougle your DD 2 course sounds like DS would love it! We also had issues with safety gear (boots) that DS has now come round to but for ages they didn't tell us he wouldn't put them on.

@drspouse there is a college in your area that offers a level 1 animal course which has entry requirements of Entry 2 or 3 in E&M. I can’t remember whether it is entry 2 or entry but it was definitely entry level because I remember being surprised it didn’t need any GCSE (or equivalent level) qualifications at all.