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.

Yes, most dishwashers only go to 70c, and even commercial ones only reach about 82c, which is not sterilising power. The benefit of ADHD is that I'll move on to a new most interesting topic soon! The benefit of ASD is that I'll remember every detail 😂

@Lougle not invigorating with lawyers more resigned, which is where I need to be. Love the dishwasher chat that’s a bit of me.

It has stopped me thinking we can work/save DD to a future without benefits. The numbers to support a disabled person are way beyond reach for us.

@HedgehogsAgree it's a hard realisation, especially as the rhetoric is 'Just get a job, you scummer'. But you're right, there is no way and knowing that means that you can direct your precious energy to what matters.

I need a better storage system for DD1's medication. I asked the pharmacy for a dosette tray (she now takes 8 pills in the morning, 1 mid-morning, 1 late afternoon, and 11 at night) and they said that she was too unstable and her meds were changing too much, so the doctors won't allow it. Fair enough, I guess, but I am overflowing with boxes.

I just got a pill dispenser (for me) from Amazon. I got this one but a recent thread had loads of recommendations. My main meds are morning and night but there were options for three times a day.
We also have a load of times for DS and both his lunchtime and teatime doses are small, white and round so I think we'd need a four times a day job.

https://amzn.eu/d/0ewYFxnt

Re benefits even if DS is able to work then I know PIP etc. open other doors for him so we shall be applying.

I use a (rip off) Filofax, with those zip close clear plastic pouches. Each “page” has the end of a pill box and the sheets of medication for that week (the rest is kept in a drawer out of sight). The pouches have time and dose in case I am away (eg 10mg 8am) and they are arranged with dividers so you start at the front of the book in the morning and work your way back. All zips up into a portable, grabable book that fits in my glove box. I take the paper drug info that comes in the box and those all get punched and stuck right at the back. Really useful for Drs appointments. I am considering adding a seizure log and list of consultants/drs etc. Ds can’t medicate himself but he can get the book and water (also in a special cup) and bring it to me.

@Lougle now this is something I have given a lot of thought to over the years.

Short of having a dedicated room for medical supplies (something that will rely on me winning the lottery - not going to happen since I don’t play), I think we have the best setup possible in the space we have.

In the kitchen/diner, we have a run of cabinets dedicated to a medical area. We have 2 sets of 2 larder cupboards with shelves and drawers in separated by worktop with drawers underneath. Above the worktop, we have a whiteboard. A medication fridge and open boxes of things like gloves and wipes sit on the side.

Once a week, when DS1 is out of the house, I get all the medication that goes in weekly organiser boxes out and sort them out for the upcoming week. And I refresh the drawer where open medication that doesn’t go into the boxes sits.

Then we also have some medical supplies/equipment in cupboards in the hallway and some in the garage.

@ZairWazAnOldLady we have a document for each DS that contains:
Name, address, DOB, contact number, NHS number, hospital numbers
My/DH’s names
Names of all professionals involved, speciality, hospital (where applicable), phone number, email.
Diagnoses
Medication
Allergies and adverse reactions
Up-to-date height/weight
Latest lung function results and microbiology results
Brief summary of notable medical history
For DS1&3, a copy of their hospital passport is attached too.

Yes I have that too, but I think in the meds Filofax would be a good refinement for me. It allows me to grab and go and the rest is in the desk.

@ZairWazAnOldLady yes, I think it is a good idea to have one you can take with you. We have a paper copy with each DSs’ medical kit that goes with them everywhere. As well as digital versions DH and I can access on our phones and paper copies at home.

I think I’ve got a bit lax so this is a good reminder. I had a quick skim through and lots of small corrections needed.

I think I need a schedule of what to focus on each month. It’s not that much changes it’s just if you don’t keep on top of it it gets crazy.
Dss new tutor is such a good fit so far. He’s bubbling and happy again (meds must be settling too). We are having various dramas beyond goosey stuff and I am still trying to diet which isn’t helping my calm. I am giving blood next week and am abandoning dieting and eating lots of iron rich food to try and give my best.

The news is fairly ghastly. How many more children are we going to watch killed by adult stupidity? Why must people be so awful?
daffodils are out and winter is gone here. That was a long grey wet time.

Glad DSs new tutor is good @ZairWazAnOldLady Yes news is horrific at the moment and seems to be escalating.

Looks like we will get refunded the flights now, just gone today although the form you have to fill in says I agree to pay fare cancellation charges but I think I found a solution and screenshotted everything. Its what someone who phoned them was told to do. Not sure if seat bookings will also be refunded but those are £200 in total out of the £1,000 cancellation charges so not that bad either way. Rest has been cancelled for free apart from 2 Sri Lankan visas but those were cheap about £39 each and they need that money more than we do. Not sure whether we book something else or not the way the world is at the moment but its rare we have cover for DS.

Cleaner is sorted, we are getting the great cleaner that came yesterday and DS let in his bathroom every week. Cat loved her as well and did a head bump to her. So that's good to have a solution on that. Its only a couple of hours and we will pre clean but its someone else in the house and it does help.

Still no EHCP. I'm not sure how many more reminders to send before going to JR. I know the LA will ask us to fill in the complaints process first... yawn...

@ZairWazAnOldLady good news the new tutor is a good fit. Well done on the dieting whilst caring for DS. I really need to lose some weight.

@drspouse if you have sent an email chasing, I would start looking for someone with the capacity to take on your case for a pre-action letter while you continue to chase. This can take perseverance in the current climate. Demand is high. The normal timescales of the complaints process mean it isn’t a suitable realistic remedy, so I wouldn’t be acknowledging and exhausting that route first. The LA can want you to go down the complaints route all they want.

@ZairWazAnOldLady good to hear it! I like the sound of a bubbly DS.

DD1 has been very hard work today. The physio decided that she didn't have the expertise to deal with DD1 (I think she didn't know how to gain her cooperation) so we have to go back to see the senior.

Tomorrow is an appointment with the psychologist, then a Teams meeting for an initial assessment for the Intensive Support Team, with a behavioural analyst and a positive behaviour practitioner. 2 hours, and they don't want DD1 to be present. DH is at work, so she may well interrupt a few times.

DD3 told me tonight that she and DD2 can't take much more and that she almost cried in the taxi this afternoon, dreading what she might come home to.

New holiday booked, much closer to home and a week but wanted something safe as world is crazy atm. Going to La Gomera to spa hotel.

lougle that is so hard for you to hear. I hope some positive help comes from the meetings tomorrow. Thinking of you.

ExistingonCoffee was your appointment with the GP useful? Though you can be anything other than exhausted I don't know.

@Lougle good luck tomorrow. I will be thinking of you.

@ZairWazAnOldLady brilliant that the meds are settling and good fits are so hard to find so that must feel great.

DD is in an awful spiral about a spoken exam next week. The nights are long and unproductive. I’ve had to call it quits and go to bed as it’s going nowhere fast. Really struggling with dumbing the assignment down and following the brief.

@ExistingonCoffee i know this time of year is really hard for you and I’m thinking of you. Mental on top of physical is a crushing combination I hope your tests come back with no nasties.

DD is 19 next week.

@HedgehogsAgree it's all so much worse at night time. Does she have to do her exam orally? Is there no reasonable adjustment that can be made? I don't think DD2 would manage that. How far your DD has come for this to be her worry. You both amaze me.

@ExistingonCoffee is there any scope for an extra bit of respite? Could you perhaps leave the house and go for a short walk while the tutors are there for DS1? DD3 has been obsessed with sea glass hunting and I must admit that while it's a time drain, being by the waves and hearing the sound of them, with the wind in my face has been very therapeutic - it's just an excuse to think of nothing except hoping that I might find her a bit of blue glass.

Last night I got to the point that I needed to get away, so DD3 and I went for a 45 minutes drive to see my old Homestart volunteer who is now in her 80s. We phone every few weeks but it's so nice to go and see her. She always has a Wasjig jigsaw on the go, so DD3 was happily correcting all her mistakes helping with that while we chatted.

Happily, the signal there is terrible and I don't know the WiFi, because I came out to a string of 29 messages on the family WhatsApp between DD1 and DH. Then DD1 left me long rambling messages about feeling like 'someone is touching me and settling on me sucking out my soul. Terrifying stuff' and that she is 'losing a battle' and 'I feel like I am a shot gun shooting ricochet of bullets in my brain', amongst other stuff. Amazing how her verbal communication deteriorates when she's distressed, but her written communication, while messy and grammatically odd, is really quite powerful. Her little brain.

I have no idea how to help her. I think some pages are missing from my instruction manual.

We bought a pill dispenser for DD1, when she was living at home - iirc, it had 3 boxes per day of the week. I also had an Excel spreadsheet with a stock count of the drugs at the beginning of the month, then the use of drugs each day, depleting the stock and calculating what day, we’d get to zero on each one, so I knew to reorder it 7 days in advance.

I also keep a life story for her, going through members of the family, the pregnancy, birth, early development, diagnoses of each condition and when, seizure types, all the drugs she’s been on, results of medical tests/procedures, and a brief paragraph on how to communicate with her. I got fed up of repeating it all, every time we had to see a new consultant; especially when they decide on a drug treatment or combination that’s been tried before and failed. Every consultant neurologist thinks they have a simple solution to her epilepsy, when all they are doing is reinventing the wheel!

DD2 had the baby yesterday by planned Caesarean, after a sea of tears! DD2 was firmly convinced DGD would be stillborn, but she is 9lbs (hence the Caesarean) and knows her own mind about getting fed and held!

Oh huge congratulations! I hope the OCD recedes swiftly.

Congratulations on the new granddaughter Blueandwhiteporcelain. I hope things improve for DD2.

Congratulations @BlueandWhitePorcelain - it must be a relief that baby is safely here. I hope your DD improves, good luck to her and all of you.

Congratulations on new granddaughter @BlueandWhitePorcelain

@BlueandWhitePorcelain Congratulations!!! Wonderful news that your granddaughter is here and well. Enjoy the cuddles.

@BlueandWhitePorcelain congratulations on DGD’s birth. I hope DD2 gets some relief from her OCD.

@HedgehogsAgree I am sorry the oral exam is causing so much stress. Are there any additional adjustments that could be made? Thank you. It’s appreciated. It is a tough time.

@Lougle I hope the appointments today are helpful. Would it help DD2&3 if you had a family WhatsApp and a separate one for you, DH and DD1? A really minor change in the grand scheme of things, but maybe something that will help DDs a tiny, tiny amount.

More care or respite is unlikely. We are not the ICB’s favourite people right now. Following DS1’s hospital admission last year, which resulted in DH’s broken nose, we asked the ICB to review their decision to pause DS1’s funding during hospital admissions. When they refused to change their decision, we issued a pre-action letter. This didn’t work, so we proceeded to JR. Their Acknowledgement of Service is due shortly. I expected them to concede when they knew we wouldn’t let it drop this time; it is easier and cheaper to settle one case than have a precedent set, but they haven’t so far. We will see what the AoS brings. I am aware we get more than many.

Thanks @NoHaudinMaWheest. I am going to have bloods next week.