The Goose & Carrot Pub

[RedRegular]

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 your DS has come so far. Sorry he has a black eye. It must be hard to move past the seizures when there is a physical reminder.

@scoopofmintchocchipicecream I must confess I had a bit of a meltdown about the car. I felt sad about giving back the car we have (although honestly it is too small now that DD1 has a power assist), then I felt a bit rushed at the dealership. The salesman is nice and he really hit it off with DD3, bantering, etc., but he wanted us to accept the car when we went in and I had to say that I'd like to see the inside first. Then I asked a question about one of the features and he said 'oh it doesn't have that'. Then he handed me the keys and I asked why it had an ignition key when the car has keyless unlock/start and he said 'oh they've stopped that.'

So basically, it turns out that the manual covers all the model variants, for all the powertrains, for all the countries, and they are changing the spec randomly as circumstances dictate. When they can't source components, they simply change the spec to remove that feature. I ordered in March and the spec changed in April, but they didn't tell anyone, other than releasing a new brochure. But the old one is still on the internet.

I think I got a bit overwhelmed with it all and was worrying about having made the wrong decision. Having a week of badly interrupted sleep and phonecalls from school to say DD3 isn't seeming very well (emotionally) isn't helping.

Anyhow, the features that aren't there now aren't deal breakers, and the car is big enough and comfortable enough. The opening tailgate window will be helpful for popping things in and out (except the wheelchair, of course). We did a 30 mile trip this evening and got 5 miles/kWh, which puts us at 0.7p per mile and 21p for the trip.

The only other issue is that our driveway is quite steep and DD1 isn't strong enough to open the sliding door against gravity, so we have to let her out.

@BlueandWhitePorcelain it's nice to hear that good results can be achieved quickly!

@Lougle can you park facing the other way? We have a slope and sliding doors and it’s a pain when I have to park there. Your descriptions of dd1s updates are exactly like my dd3s!!! I tried moving her to texting me but that got a bit crazy. Sending honks because I have no wisdom.

@Tulipsandmagnolia thatch and plans sound lovely. I’d read lots of Montessori ideas about how to shape a physical environment to promote independence (I don’t mean the insta beautiful ones though all that is very beautiful, I mean her original thoughts). It’s a fantastic opportunity to support ds in a really creative way. If your BMI is already 23 do you need to lose more weight really?

@Lougle the car specs changing sounds outrageous. I’m finding motability fairly bullish about all the changes, though I’m only reading what’s in the press so, let’s face it, could be ridiculously inaccurate. I don’t understand the smartphone black box thing. Whose smartphone does it have to be, because we both drive ds and he won’t keep his phone on or with him? I don’t think it will hit us really because we are not on a new lease and I’m saving so I don’t have to renew.

Here things are a bit weird. College still won’t have ds back and don’t answer my calls or emails (!!!!) which means it’s harder to guess what any week will look like and much harder to help his through this part. His GP did some masterful meds management and between her and the epilepsy nurse I feel looked after. The first step up on the meds is I think helping the seizures but at a cost to happiness and emotional resilience. I don’t actually think he should be in college till he’s settled. Unfortunately they are so busy avoiding having him back that I haven’t been able to tell them he could just be marked as unwell. EHC is booked for just under two weeks time but I have no feedback from anyone beyond the date. I don’t want him to go back at all especially as it’s only till summer holidays and we’d struggle to settle again before the end of term. So shit show really. Both ds and I are a bit confused by it all and a bit sad. He feels upset and unliked. They stopped letting me walk him to his classroom and so it’s muddled in with someone stopping his mummy and why why why? For my part I feel that I missed something because it’s all so odd. Ds was very shouty at the end but he was also having seizures after each upset so very obviously part of the epilepsy picture. I feel like we are being shunned for something neither of us can help. I will pull a happy life out of it all but it’s a bit unnecessary and I can’t quite see how to get there or where we are going.

If we take her phone away she resorts to email!

😆

Lots of mini reporters out there ☺️

@drspouse your posts about your DS have changed so much over the years he is doing so wonderfully well.

@BlueandWhitePorcelain hope that means you are off on your holiday today. Have a great time.

@scoopofmintchocchipicecream how is your back doing? Are you out of the woods?

DD is trying really hard but is so very tired. Some worrying things starting to happen. I hope she finishes the last of her studies but there is no way I’m pushing her. So difficult to know how to support.

@drspouse Sorry about the seizure but good all the progress.

Thanks @Zeonlywayisup I think DS will love the new little thatched cottage, assuming we get thatched. I do want to go a bit lower still and get BMI down to 22, I have 6lbs to my target so not too bad. Health wise 24.9 is fine. Appearance wise from 24.9 to 23.2 has made a big difference and I think the rest will help as well, its mainly around my hips / thighs and rest is fine already. I also had DIEP (part of stomach taken to make new breast) and they now aren't doing a second operation and to make it completely flat its better to lose a bit more. One side is fine, the other is OK but will be perfect when down last bit. I think its also psychological - the one time where I put on weight and chemo had taken my hair and op had taken my breast lots of bad things happened to DS. So its partly as I associated thin, long hair, breast back with no cancer and being treated well for DS and I. People definitely treated me differently re DS and it was some of the women. I think it was largely the hair but normally I look very feminine and thin and the lack of hair, breast and weight made me look less feminine. Its also love hair and breast being back and to complete it ideally want the weight I was for years. I think I want life to go back in time for DS and now I look like I used to it feels like its starting to happen. DS used to be obsessed with my hair as well. Its also going to the spa with lots of mirrors. 😂

Hope your DD feels brighter soon @RedRegular How long is it to the end of term? I think my DD will be back end of June. Does she like scented candles? Or some nice food?

she resorts to email

@Lougle I’m not surprised you had a meltdown. I’m only surprised you haven’t had more with how much you have on your plate. That isn’t a bad mi/kWh given it is a larger car.

@Zeonlywayisup for those who have Smart Drive, every driver needs the app on their phone. You can’t just have one phone if you have more than one driver on the insurance.

Contact the LA if you haven’t received the updated advice and information at least 2 weeks before the meeting.

@RedRegular I hope DD can make it over the finish line.

My back is improving, thanks. The acute pain has eased and I can move a bit better.

@scoopofmintchocchipicecream I don’t want him there anymore. I’m looking for a good exit but even that is hard to navigate

Even if, or especially if, you want a change of placement, you need the updated advice and information. That is a key part of the AR process.

@Tulipandmagnolia Assignments are due in on 26 May. Interesting that you want to look like better times I can understand that. If it’s worth anything at all, when we met I thought you were very feminine and glamorous, great dress too! Candles are now lit, good reminder even if it’s for me to stare at to calm my nerves and pretend I’m not bothered either way about assignments.

Visiting a new school next Fri - we'll see how it goes!

I think we just want to do our own thing. I’m tired of squeezing my beautiful son into shapes that don’t help him and don’t make him happy, and tired of having to be “grateful” for less than minimum and really tired of having mine and his life highjacked in this way.

Yes, I agree. I was there in my jeans and t-shirt (tbh, it's never going to be any different) and you were wearing a fab outfit.

I always think it's really odd the way some people can wear really flamboyant clothing and it just looks...right. Not outlandish, not attention seeking, just 'right'. Other people, like me, would just look like they are auditioning for a pantomime.

@RedRegular I hope DD can get them done. I agree with not pushing. I've just had the exam schedule for DD3's GCSEs. Her paper 2 maths is happening 5 days before her teacher leaves, English paper 2 is 3 days before, and paper 3 maths is happening 2 days after her teacher leaves. I wish she could have waited until the end of the academic year.

Yes leaving before the end of the academic year is awful. One of dd3s teachers left in the Easter hols just before her IB. Infuriating.

"I will pull a happy life out of it all but it’s a bit unnecessary and I can’t quite see how to get there or where we are going."

The first step, I think, is to realise that you didn't miss anything. Your post here "I think we just want to do our own thing. I’m tired of squeezing my beautiful son into shapes that don’t help him and don’t make him happy, and tired of having to be “grateful” for less than minimum and really tired of having mine and his life highjacked in this way." says it all. You've been taught to accept that your DS is such a problem that even having him in their room is a privilege. Awful and absolutely not true.

For whatever reason, and it really doesn't matter what it is, they haven't seen DS. They haven't made the effort to meet his needs. They've decided to make him the problem instead of looking at what it is that is causing this fine, amazing, happy young man turn into a distressed, angry young man.

I would email them and tell them what you want for that graceful exit. Do you want them to send him a goodbye card from his classmates in the post? Do you want them to send him a certificate of achievement for his time at college? Do you want them to arrange a 'goodbye DS' session on a particular date (or would that cause more confusion and upset?).

For DD1, at college 1 it all went south and she couldn't bear the thought of going back in. So we left it. I think they emailed us a certificate.

College 2 sent goodbye cards, a certificate, and offered for her to go in to collect some stuff. She declined.

College 3....she was never going to set foot in that place again. They tried to arrange goodbye sessions. They tried to arrange Zoom sessions with her. They tried to set work she could do. No.thank.you.I'm.done.

You've got this. This is the start, not the end. It's time that DS gets what he needs.

@Zeonlywayisup I've just seen your post about Motability - you wouldn't need the SmartDrive App if it's you and DH that are transporting DS. It's only if there is a driver under 30 (so if you added DS's twin, for example). In any case, it would be the driver's phone, not DS's phone that connects to the app.

We visited the large agricultural college today with school for DD2 and DD3. DD3 was completely overwhelmed and shut down. She has dissolved this evening, sharing how she was completely paranoid that she would see someone she recognised so tried to make sure she was looking the other way whenever someone was looking at her, and she's frightened that someone will decide she's ready for college and can leave her school.

DD2 really liked the animal area, and was trying desperately to think of ways she could cope with the college. Someone from Additional Learner Support joined the tour and spoke to me. I explained DD2's needs and she was nice and encouraging. Then I got home and received a copy of the consultation document they sent to the LA.

In a nutshell, they have said that they can support DD2 if the LA 'rewrites the wording of the EHCP' so that she doesn't have the needs that she has. If she can cope with shared TA support in class (which is only an endeavour, not a certainty), contact with a keyworker once per week, the ability to 'talk to an adult' in the welfare hub occasionally, and a 'time-out card' that allows her a set period out of the classroom, in full view of the class teacher, to self-regulate, then return after the set period, it's all good.

They are a mainstream vocational college with the goal of preparing young people for work, so feel that 1:1 is inappropriate, they have no specialism in ASD, they can tell staff to be mindful of strategies but they all do their own thing, they can't provide consistency and staffing can change at the drop of a hat, and they can't provide any emotional literacy programmes.

All in all, it seems that they really want DD2 so they're willing to pull out all the stops! Oh, wait...hmm.

Going off what my DS, who's doing well at the moment, would need - those stops do not sound enough. Not nearly enough. Not the right ballpark, in fact, not the right city, country, or planet.

@RedRegular Thanks. We are in Athens tonight - we ate our dinner admiring the Acropolis, lit up in the dark.

IMO, DH tried to wind me up on the flight. He asked me what I know about the Ancient Greeks? I listed some of the literature I’ve read in translation….The Odyssey, The Iliad….He said “The Iliad - wasn’t it written by that Irish bloke? I assume he meant “Ulysses” by James Joyce?

@Lougle that timing is terrible for DD3, it’s managed to cover the build up, the middle and the end. I would be contacting the teacher to ask if texts of encouragement can be had, totally unreasonable as it’s a job and she has left, but still come on you know your audience why would you crash and burn them.

@Zeonlywayisup honk honk it’s rubbish to have to fill the void of provision. You will do it and do it well but it’s not fair. A leaving card was a good thing for DD as it popped back out over the years when she worried.

@BlueandWhitePorcelain Ooo pretty! Enjoy every minute.

@BlueandWhitePorcelain wow, Athens sounds so cultured! Will we get a picture of some scenery?

Athens sounds great @BlueandWhitePorcelain hope you have a great birthday.

Its horrible when placements end like this and sorry you are going through this @Zeonlywayisup.

Thanks @RedRegular and @Lougle can't believe it was almost 3 years ago now when we met.

Here is a photo on my phone with zoom to cut out some ugly modern buildings round the base - the Acropolis at night from the hotel restaurant! Another photo of the Odeon, with the Parthenon above it!

@Lougle - the FE college sounds a bit discriminatory to me?