The Goose and Carrot July Edition

[Lougle]

All welcome, and everything disappears after 90 days.

I'm sorry it's so hard. Poor DS. It sounds like a great idea to move him but a lot of extra work for you on top of all you are already doing.

There is altogether too much work all round at the moment among the geese. (🪿 ooo look a goose emoji popped up). I think I just have to accept this summer is going to be chaotic. I’m finding just keeping up with laundry etc very challenging at the moment. Nothing a really hard push won’t resolve but it’s finding the time to get there that’s hard. Ds’s weight is snowballing and no sign of the valproate prescription yet. The entire discussion at clinic revolved around switching but subsequent letter seems to be less adamant and more “we might increase present drug first”. Rather confusing though I wonder if his weight gain means we aren’t on as high a dose as I thought?
New locks needed on the bathroom again (I think the third set in a year). I’m going to have to get a professional in to do it I think as it’s bespoke (in an ancient way not a posh way). I need to be able to get in there much more easily. Is it a carpenter or a locksmith do you think, that I need. I’m always so under qualified for being the grown up.

Replacing a bathroom door lock is a carpenter or odd job man thing (in our house it's a DH job and he's no locksmith). It could even be a YouTube tutorial job (DH is a fan for difficult jobs, me for bike maintenance jobs).

DD bedroom has a bathroom lock that's openable from the outside with a coin, small table knife, or summer holiday scheme pretend medal. We don't have locks on the bathroom or toilet, but all of these are for sibling rivalry or small child investigation of locks reasons rather than epilepsy reasons.

Ok...pep talk needed. You are in no way under qualified for being the adult. You are at the stage of 'Are you drowning yet? No? Let me put my foot on your head and help.' It's too much. All of it. For anyone. I always feel like crying if I hear the song "Surface Pressure" from Encanto - it sums up so much of how I feel life is for the likes of us.

I love it that you've clarified the bespokeness of your bathroom door so we don't think you live in a decadent palace 😀

Once again, all I can think is "I wish @Wellzizizbetter was around the corner from me."

DD3 has her driving test in just under 2 hours. She hasn't yet taken her ADHD meds so she's giddily talking about all the wild animals she'd like as pets. I think I'm going to get her to take them at 11.30 - they're kicking in quite abruptly and wearing off quite quickly so we have to time it right so that they're balanced when she's taking her test.

@Wellzizizbetter I'm sorry it is tough at the moment. We have bathroom door locks that can be opened from the outside. The doors for the main bathroom and downstairs toilet were re-hung to open outwards, too. Would DS leave the bathroom door unlocked? You could make a sign if he is worried about others walking in.

@Lougle good luck to DD3.

There are a couple of reasons why I think Oakwood might not be suitable. I think DD1 might struggle with some of their students. That sounds awful. It isn’t a criticism of DD1 or their students. I’m just thinking back to how you have described DD1 struggling with some others at her previous educational placements and social care settings. Although they are used to DC with complex needs, I also think there is a chance they won’t be able to provide the level of input DD1 needs.

DS1 seems better than he was last week other than his dystonia, which is causing problems.

Does DS have generalised or focal dystonia?

I have cervical dystonia, but had my Botox injections last week, so it should be much better for the next nine weeks?

Does Botox not work for him?

I'm glad DS1 is slightly better, at least, @inthequietofdawn .

Thanks for the inside information about these places. It's really kind of you - I hope I'm not being annoying!

Oakwood Court has come back to me to say they don't do resi anymore. St John's have replied to say that their environment is very challenging for wheelchair users and although they plan changes, they will be years away.

The Sheiling have replied giving their full consultation response and the bottom line is that they don't think they have the expertise for her mental health needs, as well as all the cohort, etc., so they feel that her admission would be incompatible with the efficient education and use of resources of her, and others. They did offer to give a more detailed response if I resend the EHCP. I''ve said that ultimately it's her mental health needs that need most attention, so if they don't think they're right, the last thing she needs is well-meaning acceptance that will do further damage.

I think that leaves National Star.

DD3 was unsuccessful. She drove beautifully through the whole test but nerves got the better of her and she made a turn at a roundabout when she should have waited because a Tesla came through at speed. It didn't help that the examiner gasped and pursed his lips. She's very upset.

That is disappointing for her. She is doing well to even try. Passing your driving test is a lot down to luck as to who is on the road at the same time but, hopefully, it will not be too long before she gets another test date.

Oh that is disappointing @Lougle (the cynic in me thinks lots of qualified drivers would have done the same).
Annual review for DS, school were more polite than usual but still brought up "he's refused SALT" to which we said "well we tend to say sorry mate you're doing it but try a short one and then a longer one and have getting to know you sessions WHICH THE PRIVATE SALT PUT IN HER REPORT".
DD asking me about DS going to Explorers. She sounded disappointed they weren't going to the same unit!

@Lougle oh, I’m sorry. DD3 has done brilliantly to get to this point. I hope she isn’t too disheartened by it. You aren’t being annoying. Don’t worry.

@LathkillDale generalised. Botox and meds help, but don’t prevent all unwanted movements. DS1’s dystonia has been tricky to manage this year. Earlier this year he went through a bad spell. He was heading towards dystonic storm and had an admission to ICU triggered by an infection which took a while to find the source of.

Thank you @inthequietofdawn . I fear that DD1 is going to rejected by everywhere because she'll be too autistic, not purely autistic enough, too verbal, too mentally ill, too learning disabled, not learning disabled enough, and too physically challenged.

DD2&3's school is shocking with communication. DD2 leaves on Friday. Last year, the parents of leavers were invited in for graduation, so I asked her tutor. He said we'd be invited in the next couple of days. For Friday! Then, we got an email telling us that graduation was on Thursday and we have to be there at a set time. So I got to school this afternoon and said "I'm now confused. Is this right, that graduation is on Thursday and Friday is a normal day? Because I have an appointment on Fridays which I was going to rearrange, but if it's Thursday, it's fine. 'No, it's Friday.' But I've been told it's Thursday.... No. So I show them the email. "Oh, that's a mistake." Seriously! There are only 28 pupils. How hard can it be?

@Lougle that communication, or lack of, is infuriating! The school must think you are sat at home twiddling your thumbs. How is anyone supposed to plan their time?

Your worry about DD1 being rejected is why I mentioned some of the potential options are not wholly independent. (ETA: I’m not suggesting pushing DD into an inappropriate placement. Just if you think one could work that isn’t wholly independent, you could still pursue it.) I know you wanted to stick not too far from home, but I would look further afield. It isn’t unusual for residential placements to be a long way away. They can still be very successful. If you want an example from MN, I don’t know if you remember @ellie56 (I hope you don’t mind the tag Ellie) who was a regular on the SN boards when one of her DSs was younger. Her DS travelled a long distance for a residential post 16 placement with amazing success.

lougle I am sorry about DD3's driving test and I hope it doesn't set her back but she has done amazingly well to get to the point of taking the test so quickly.
Why do schools find basic communication so difficult and with 28 pupils there is really no excuse.
(I don't think it is confined to schools though. My gripe this week is with church. I have been leading midweek prayers every other week for a while now. They decided to change the start time but didn't inform me. I found out from the weekly notices. There are only two of us leading these prayers.)

inthequietofdawn I hope Ds1 continues to improve.

wellzizizbetter hang in there (what else can you do?)

@NoHaudinMaWheest that is so disrespectful!

@inthequietofdawn I do indeed wake up each morning and think "What on earth shall I do with the next 15 hours until I sleep? I shall wind the bobbin up all day long." Honestly. Then schools spend hours in meetings discussing parental engagement and what strategies they can use to increase it - perhaps start by giving, I don't know, a month's notice of something you knew was going to be a thing right at the beginning of the year?

It's a strategic issue, really (ex governor hat on). The board of trustees has no parent representative members, so they are trying to make strategic decisions without the perspective of parents. So well meaning questionnaires ask the wrong questions, etc.

@inthequietofdawn I guess I wanted her to be within travelling distance so we could visit in term time if she wants us to. Perhaps I'm being unrealistic. I looked at St Piers but they're only weekly boarding.

St John's have an open day on Thursday but I don't think it's worth it because they've said that if she uses a wheelchair it would be very difficult. If it would be difficult with a wheelchair, you can guarantee she'd need it more than somewhere that wouldn't be difficult with a wheelchair. It's a paradox.

I wouldn't want to make any of them attempt to cope with her if they aren't up for it, even if I could make them. She absolutely can't have a placement where they don't appreciate the extent of her psychological support needs.

At this rate I feel like I should ditch social care, ditch education and just hide in an underground bunker. But she's driving me batty in the house, so actually, a tin roof would be unbearable!

@NoHaudinMaWheest how rude.

@Lougle I don't know if it is true because it is information from another parent rather than direct knowledge, but another parent told me St Piers is full for residential placements.

You may think DD1 wouldn’t cope with the travelling, but some DC weekly board hours away from home and some termly board but still come home some weekends during term time.

@Lougle - you could try ringing up St Piers to see if there are any residential beds left?

The psychology department used to be good. I don’t know if it still is?

I've emailed St Piers and can follow up by phone. It's a bit weird because they say about offering weekly boarding, but their calendar says 'weekly and termly boarders return', so whether they've changed their model, I don't know.

They must have. There were 48 and 52 week placements there ten years ago.

Iirc, there was criticism in a CQC report about there not being enough nursing cover at night in the school holidays for students still there.

This is only a guess, but I wonder if they decided it was cheaper and easier to eliminate that criticism, by not having students at all in the holidays? It may also be easier to recruit care staff, especially those with children for Monday - Friday, term time only jobs? The head of St Elizabeth’s told me that. The care staff at St Piers complained to us, about having to work weekends.

I was just looking at Beechwood College in Wales. A few of the Google reviews are alarming though.

My utilities bills X were lowest in March. April X plus £10, May X plus £50, June X plus £100 (June we had 7kw-15kw running 18-24 hours a day). An average room size unit is 2kw or 2.5kw. In case anyone is thinking what heavy usage looks like.

Saturday I spent the day somewhere that was a breezy 20 degrees, it was unbelievably refreshing.

I hate air conditioning and never have it on in hotel rooms abroad, although it is nice in a car, when dealing with foreign driving.

However, I know the chances are, when I look at DD1’s seizure charts for the year to date in September, I will see an increase with the heat. She had a drop attack on Saturday night and fell back onto the radiator in her bedroom. The nurse checked her over twice.

Her chest is bruised and she can hardly move - she’s begging us to help her, and we can’t. (I know from past experience, even if she’s broken a few ribs, there’s nothing they can do really.) I’d just use some of her DLA to pay for the extra electricity, because imo that’s what it is for.

@LathkillDale poor DD1 that sounds really painful. I’m not keen on aircon either and would much rather have doors and windows open, I’m sitting in my winter clothes for much of the summer. Yes this is exactly the kind of thing DLA is good for.

DD’s MH is taking a downward turn so it’s intense again. I hope it resolves soon or there will be no night away for me and DH, selfish but but but <sigh>

That's so hard for you all, but ribs are so painful and ineffective breathing leads to chest infections, etc. Could they not even find out so she could have a bupivacaine patch for a few days or something if they're broken?

@TheGoodCat not selfish. Is it an end of term structure loss slump, or do you think it's something else?

We had DD1's CPA meeting today. Psych said I had her on the wrong dose, so I had to say that I keep a calendar entry of changes and she'd told me to change it on x date. Then she confused herself and told the GP to prescribe a different dose, so I had to say that we were on x dose. Then she said that was right.

Then, she asked me how they can monitor the effectiveness of the drug if DD1 won't see them and doesn't report accurately, and at what stage in my opinion did she need to be admitted to hospital. I told her that I really thought that was their job and I shouldn't be expected to make those judgements.

Then she said she'd diagnosed her with ADHD, so we'd start medication, but she wanted the GP to prescribe. GP politely said that's not how it works, and that she needs to titrate the choice of med and dose, then when DD1 is stable, complete a shared care form. Psych didn't seem to know what one was, and kept suggesting that she should send a letter to the GP asking her to prescribe each time. GP pushed back again, and said they couldn't take responsibility for titration. Eventually, the GP sighed a little and said that she wanted to ensure that DD1 didn't face delays in treatment, so she was willing to prescribe the first batch of medication while the psychiatrist got systems in place going forward.

The psychologist didn't seem to know about the CPA, so she's visiting me tomorrow (DD1 is refusing to see her).

St Piers have confirmed they are weekly boarding with a few remaining termly students. They think they are likely to be full, pending funding decisions, but invited me to send DD1's EHCP over.

@TheGoodCat I hope the slide is a temporary blip and you make your night away. You aren’t selfish.

As long as it is affordable, I think aircon is worth the increase in electricity bills. Our gas and electricity bills high anyway. I try not to dwell on it.

@Lougle I see the psychiatrist hasn’t improved. How can she not understand the process of prescribing such meds and shared care?

I think it was around 2022 when St Piers moved to weekly boarding.

@LathkillDale that sounds painful.