Join us in the Goose and Carrot Pub thread.

[ExistingonCoffee]

A thread for all who have DC with SN. The thread is deleted and 90 days and doesn’t show in active. The fire is on and the bar is well stocked.

Pharmacies don’t get paid for doing dosette boxes; and the dispensers find doing them tedious, because they take a lot of concentration. Too many dosette boxes and the dispensers leave. That’s probably why your pharmacy doesn’t want to do them, in the face of frequent drug changes? Why create work for the dispensers, they don’t get paid for and may turn out to be pointless?

It's not that. Our pharmacy knows us really well and they would happily do it. The doctor's surgery won't do it because they only want to issue monthly prescriptions and DD1's medication could change within a month. They do my DM's dosette tray without complaint.

Found a really simple solution to WiFi. DH was dealing with it but I took over today as he is away. We really should talk more as he is trying to fix the bigger picture and what we needed was just to get the laptop working.

I’ve been out twice today, twice! I tell you. Once with DD and once on my own leaving DD for 2 hours alone this evening. My underused legs are aching. It’s cheered me up no end, something other than the gruelling eduction process.

@HedgehogsAgree I'm so pleased for you!

@HedgehogsAgree oh I’m so glad you got a break. Isn’t it funny how amazing it is to walk freely? I didn’t get that today but when I do I feel totally spaced out with it all.

@ExistingonCoffee i think eotic is really the solution but getting there is very very very hard. You have to know what you want to aim for it and I don’t know anything. Then find the time and space to create it and then push it through. I know all of you have done it but I’m just not sure we have what’s needed. If ds sleeps tonight he is in college for an hour and half tomorrow so in theory I have about 60mins but I need to talk to the epilepsy nurse or write her a mail.

Here 2 month prescriptions are the norm, although DD2 herself used to get her antidepressants weekly (due to the suicide risk, I guess); and when she was working as a pharmacy dispenser, she said some customers say on morphine got it weekly (as they were clearly very dependent on it).

DS wrote a cracking email to the SENCO on Sunday, about how abysmal the Additional Support Plan was for DGD. They have had a good ed psy report on DGD’s difficulties, which they have apparently ignored in the ASP. He said, normally the SENCO stands at the school gate, greeting all the parents - this week, she’s at the back of the playground! He also had to talk to DGD’s teacher at school pick up time on an unrelated matter. She avoided all eye contact with him.

@HedgehogsAgree Oh, how exciting! I am glad you have solved the tech issues.

@ZairWazAnOldLady you don’t have to be involved in creating a package if you don’t want to. Legally, it would be the LA’s responsibility. They can’t compel you to. At this point, you don’t have to know exactly what provision DS needs. Updated advice and information would inform that.

@BlueandWhitePorcelain the thought of storing 2 months’ worth of medication leaves me in a cold sweat.

@ZairWazAnOldLady i think we all form ourselves into such a tight and expert pretzel of support for our goslings that it seems impossible to imagine how to describe needs let alone find support to deliver them. I got stuck as what was the point when DD was too ill and now everything feels so fragile I can’t risk being distracted by the fight for provision or forcing her through wrong provision and constantly tweaking as we might lose what functionality she gained. I think you have what it takes but the time needs to be right for you to focus. It’s been a tough few months for you.

@ExistingonCoffee are you saying I can just request a review and then critique what they produce. I don’t think they will produce eotic or anything like that. I think they’ll say he should transition to adult services and stop education.

@ZairWazAnOldLady yes, you can request an early AR, and as part of that, pursue updated advice and information. If you don’t know exactly what is needed, you don’t need to let that put you off requesting an early review.

Then you can appeal if the outcome of the AR isn’t what you want/need/you aren’t quite sure if it is. It isn't uncommon to start the appeal process without knowing exactly what is needed.

If the LA try to cease to maintain, you would be able to appeal and the EHCP must be maintained, and is enforceable, until the conclusion of the appeal. Personally, I would be fighting to keep the EHCP. Not least because educational provision is not means tested. Whereas, adult social care is. Also, more therapeutic provision is possible with the EHCP and F is more easily enforceable than adult social care provision.

@ZairWazAnOldLady am I right in thinking that DS is currently not classed as having a learning disability? Was that decision made a long time ago? An updated psychology assessment might be helpful, because certainly in my area the LD team is relatively well resourced and there is very little support for people with ASD but without LD. If your DS was reassessed and does in fact have an LD, it might open some therapeutic doors that way. Ignore my pondering if I've got it wrong, though.

I'm just wibbling in the corner. When DD1 was psychotic, all the crying about being in physical pain seemed to vanish and was replaced by crying and constant demands to be taken to mental health hospital and sectioned. Now that she's not psychotic, the pain and demands to go to hospital are back. Between direct WhatsApps to me and WhatsApps to the 'family' chat, I've received 46 messages from her today between 12pm and 8pm. We were out this morning at the aquarium. It's just relentless and I don't know how to change it. Even her psychologist sighed on Friday and said 'aannd we're back to the beginning, aren't we?' when DD1 went out to the toilet. The 'college and learning' demands were replaced with the 'section me' demands, and now we're back to the 'college and learning' demands.

Yes, I know what you mean! When DD1 comes home for a week, I always ask for an extra week (in case of illness or injuries from drop attacks, meaning she’s too incapacitated for the journey back). Two weeks is enough to fill a carrier bag! She’s on 5 AEDs, two emergency meds, 2 different strength levothyroxine tablets, two laxatives, iron supplements, vitamin B3 supplements, multivitamins, prescription toothpaste (to strengthen teeth for drop attacks) and Movicol (in case the laxatives don’t work)!

Until recently, the onsite pharmacy made up dosette boxes; but they’ve given up and all drugs are in the original packaging now!

A wise idea to have an extra week @BlueandWhitePorcelain. Last thing you need is to be needing to sort medication in a hurry.

A carrier bag for 2 weeks’ worth would be a dream here.

DS1 takes at least 46 tablets/capsules every day plus several extra depending on what he eats/has feed wise. More on 3 days a week or if he is unwell, dysregulated or if it is hot. Then every day he also has some liquid medications, inhalers, nebs, insulin, various creams/ointments/body washes, eye drops, nasal spray, and movicol. Subcutaneous biologic injections every 2 weeks and IM ergocalciferol injection every 3 months (At least the B12 isn’t delivered to our home so I don’t need to store that). He has a few different emergency medications. DS1 has toothpaste too.

That’s not including things like dressings, adhesive remover (DS1 would say the most important item), feeds and ancillary items, incontinence products, gloves, aprons, etc. either.

Thankfully, DS2&3's list is much shorter.

@ExistingonCoffee that sounds like a job in itself. I find the meds/appointments/observations ok when I’m on top of things but it tends to be the first thing to snarl up if care needs escalate. This year was always going to be tricky as there’s an unfortunate clash of expenses and people needing me. It will ease but in the meantime it’s less juggling and more some sort of hellish just in time nightmare. I find hearing how much you manage very comforting, if a little awe inspiring. Do I ask the LA to review (which is what I would have assumed precollege) or do I ask college? Would ds being only in for 1.5 hours 3 times a week rather than his previous 3 full days be a good “reason” or should I focus on the lack of academic qualifications or the fact he isn’t getting any time outside of a classroom (so no moving around the site any more to practice walking on pavements, no gym anymore at college, no change of teachers) or no SALT and focused development? These are all things that concern me but I don’t know which holds the most weight.

@Lougle the LD question isn’t straightforward really. He’s not diagnosed with LD (as far as I know) and strictly speaking I’m not sure which criteria they use. He doesn’t have an iq under 70 (or at least I’d be gobsmacked if he did, it’s hard to measure kids with his profile) so he doesn’t fit the NICE criteria but he fits the DHSC criteria easily
A significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with a reduced ability to cope independently (impaired social functioning), which started before adulthood'
I have added to the muddle because I got tired of trying to describe his deficits and just started saying he had a LD to smooth his path. Realistically without me there to interpret and soothe he presents as LD (which I would say he is regardless of IQ) so it’s a moot point. I’m pretty sure someone just ticked that box for him and nobody has ever queried it. It does cause some issues for us though. On the whole Ed psych reports don’t enlighten because they are unable to bridge the communication barriers. Most things he does that are considered “clever” are dismissed as odd autistic spikes when some are really just normal.

@ZairWazAnOldLady would it be worth asking for a referral to your LD team? DD1 doesn't fit neatly into an LD category. Her last assessment had her in the 'low normal' zone for some aspects, 'low' for some, and 'profound' for processing. Those disparities combined with her fine motor skill challenges that affected her performance in some areas meant that her overall IQ couldn't be calculated. Now, she wouldn't be able to complete the assessments. Despite that, in the onboarding meeting, her psychologist said that it was stupid to even be debating her level of LD, because it was clear that she was going to need lifelong support regardless of whether it was her ASD or LD that caused her difficulties.

The LD team is our biggest ally right now. They can advocate for the right provision educationally as well as doing direct work to improve function and ensure support.

@Lougle I disagree with the psychologist, that it’s pointless even debating DC’s level of LD. Eventually, unless the siblings are willing and able to care for them, after your death, DC will need either supported living or residential care, if the level of need is that great. It’s then helpful to know what the LD is, to choose the appropriate peer group unless DC is going to have their own individual accommodation with staffing 24/7.

Otherwise, if DC is of normal IQ, but they are functioning at a MLD level due to the impact of say a language disorder and dyspraxia, or whatever their SEN are, then you would be looking for that peer group. A care home for people with severe learning disability, autism and challenging behaviour wouldn’t be appropriate.

It’s also a continuing problem, if care staff treat DC as if they have severe learning disability, when they haven’t!

@BlueandWhitePorcelain I've probably been a little brief in my explanation. The psychologist is very much interested in the level of LD DD1 has. She meets with us weekly to work with DD1 and her thinking and to try to decipher how all the elements of her presentation overlap and the interplay within them. However, this was a meeting to decide if the LD team would be taking her on, and for that purpose the psychologist was simply saying 'stop arguing over the details of where DD1 sits to debate whether we should be involved. It's obvious that she needs our help.'

DD1 is likely to need her own accommodation with 24/7 care because she can't cope with other people.

The pinning down of what the disability is to find peer group and focused support is totally unachievable for ds. He doesn’t have any peers and he too is unmeasurable really. On top of that his presentation changes (and I mean HUGELY). Support here is very patchy and it’s unbelievably hard to even find out what is supposed to happen, what could happen and what will happen even for the very near future. For example two people at college have told me there isn’t an appropriate course for [name redacted] next year but that he should transfer to adult care anyway. No one has explained why or what that means. The epilepsy is awful and unpredictable but ds is actually doing well. For example as most of you know we have had a learn to eat new food campaign going hard for a year or slightly more. In the car on a family trip dt2 offered ds a paprika crisp and he proceeded to eat a family size bag in huge mouthfuls like an American high school jock in a movie. WTF????!!!! No cajoling, no touching/snoffing/licking, nothing…. This is a child who couldn’t eat breakfast cereal for about three years because I once offered him the Tesco version, who only drinks milk or water ever, who ate three meals in rotation for ever. It’s not just the food though that is the clearest picture for others, it’s everything. I read my phone while he changes for swimming now. He goes swimming in a public swim session and we arrive as three schools cross over in the changing room. He likes it!!!! This week he greeted them all with his huge gruff voice saying “Hello children” and it was good.

DH and I have had another conversation about wills/trusts. After the Easter holidays I think we will go and see the solicitor and then chat to my DU who is our executor (he's of an age with me not my DPs). We will probably propose something like a trust for DS beyond 25 (but only up to 25 for DD) and while we obviously hope that DS will be financially independent by the time all of DH, I and DU pop our clogs, I'm thinking of a niece and a cousin (both early 20s) to be financial trustees (is the person in charge of the trust the trustee or is it the person who gets the trust?). They are both caring and responsible but DS isn't their close relative so I think a shared responsibility would be better. We can always change it later.
I think my biggest worry in early adulthood for DS is that he wouldn't be able to pay his bills because he's spent all his money on doughnuts but if he was living independently and we weren't around I'd worry about "friends" borrowing money from him.

@ZairWazAnOldLady the brilliant advances need to be celebrated. Enjoying a bit of jostling and noise and chipping in is great news.

@drspouse the trustee is DA the beneficiary is DS. I’m interested in what your views are after discussion with a lawyer. Good luck.

WiFi Hotspot used 80MB of data and DH has just informed me that data is not unlimited on our tariff. It’s been unlimited forever but last year we switched our phones to a family bundle managed by DH, oh dear. DD has hit a brick wall, just so tired and had enough. I’ve cancelled her lesson today and she is in bed.

@drspouse financial vulnerability was top of the list for our lawyer. They were a MenCap suggested lawyer and very local. What they did say is that building a relationship between them and DD would help her have a known lawyer to check financial requests with in the future. As in ‘I can’t transfer X£s to your account I must check with my lawyer first’.

Huge thanks for catching my indiscretion @ExistingonCoffee. DS1s learning is completely stifled by his communication difficulties (which are retreating but not to “normal”) and by his other difficulties. He also is uninterested in much of the world, not in a depressed way but because he’s perfectly happy as is with us doing most things. I would say he feels some bits aren’t worth the effort and just blanks them. I don’t think it matters really what his dx is unless it’s pushing him out of or into something unsuited. Our plan (and his) is for us to provide for him with state support to supplement. IF they could actually provide what they should now I would be much more confident that we could swing that. As it is I’m mid 50s and have 10 to 15 years to bed us down. The knock on effect of poor provision, Brexit, and now the present conflicts is making things very difficult to plan for for everyone.

@ZairWazAnOldLady I realise when I quoted part of your post I included the part with DS’s name. Sorry. I have reported and asked MN to redact.

Zair Existingoncoffee lougle it is extra hard when the boxes don't fit. I think the boxes don't really fit any of our dcs but some are less good than others.

Reading everyone's posts makes me feel that we have got off very lightly here.

Ds has finally got an interview date next week for the possible new job. He seems very chilled about it at the moment at least.

DD is enjoying her tutoring but there is some difficulty about the venue. The student has some valid concerns about meeting in a public place but Dd can't get into her home without quite a bit of extra pressure on herself. So a conflict of interest which will be difficult to resolve. Dd is asking me for advice but basically is handling it herself with support from her supervisor which is a huge step forward in independence.