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.

@HedgehogsAgree that sounds like real progress. Set a reminder for three days time and do it again. It’s really hard to not wait when you have been waiting so long. Letting dd have the house to herself and breathing free a little yourself is just amazing. Don’t lose your nerve.

That's great your DS has been asked to apply for a better job @NoHaudinMaWheest Hope he gets it.

That's good you could get time out with DH @HedgehogsAgree

DH and I went to the Kew Orchid Festival, walk round Kew and lunch there today which was lovely. DH mentioned that DS has been cooking sausages in the frying pan a couple of times last week. He took a bath whilst we were out. DH and I hopefully will continue the garden path work and put the new solar dandelions out tomorrow. Also will be cleaning the floors as someone has made them muddy.

@ZairWazAnOldLady a wise not old lady, holding my nerve is where it’s at. DD was not asleep and was delighted to tell me that. I hope she had shinnigans (left her room) with the house to herself.

@Squirrelsandhedgehogs Kew is always a joy I haven’t been for a long time but I do have an orchid that hasn’t flowered it was in the 99p Morrisons sick plant section and bloomed for a long long time but seems to be dormant now.

Thanks @HedgehogsAgree It was lovely, I especially loved the pandas. DS used to love pandas.

DS took a second bath in the night, two baths in one day we have a new record though with the amount of mud he plays with can't say it's excessive.

We went to the Orchid Festival once, it was beautiful!

@Squirrelsandhedgehogs - how do you cope?

Yes its so beautiful @BlueandWhitePorcelain

My life is pretty easy - I used to have good jobs, made money on property and saved enough so I don't need to work. DS gets benefits so there's no financial pressure. DD is now at university and loving it and we have her here about a third of the year and she is so full of life and doing so well that's nice when she's here. DS its very sad and I worry for his future and feel angry at what happened, angry we weren't listened to but I have to not spend too much time on those thoughts and I mostly manage that. Cancer is over and done with and a few years ago now and that has a tremendous support system and kindness around it so that doesn't bother me. DS is also fine with being left alone in the day, he seems to prefer it, so that allows us to do things. I have a DH who helps a lot and works mostly from home and a lovely Maine Coon cat and 3 silkie chickens who follow us round. I did pretty much what I wanted to working and had jobs I loved, live in my perfect home, we can get holidays by going in twos, not ideal but so much better than not being able to go. I enjoy renovating the house and garden.

You do sound happy @Squirrelsandhedgehogs despite all the awful things you've been through.

I'm back from Scout camp and we've booked to go out to dinner as there was a voucher. DS had a blast, wants to know when he can go again, DD I think enjoyed herself despite saying she was bored. They were just chilling inside and out - kicking a ball about, playing frisbee, climbing trees, playing Top Trumps and Uno. I did some knitting and read my book. Still exhausted though! Wondering if can persuade DH to take the car. DS asked immediately to sew on another Scout badge. I hold them still for him and he does a really good job considering his dyspraxia.

@HedgehogsAgree hurrah for lunch with DH.

@drspouse glad camp went well.

@Lougle have you booked DDs’ driving tests yet? I know the wait for tests is long. The instructor DS2 will be starting with later this month has said to book the test as soon as he has passed his theory.

Yes, booked but not until July, annoyingly. I keep checking the change driving test site, but as they only release tests on Mondays, nobody will be changing.

Thanks @drspouse and great to hear scout camp went well.

Had roast dinner for lunch then spent 4 hours gardening and then cleaning downstairs floors and kitchen with DH. Cleared almost all the leaves, laid some more stepping stones, cleared some old tins, cleaned the shed, cleaned the chickens and put up the 3 new solar dandelions. We now have snowdrop, crocus and winter aconite out and several other flowers like camellia, hyacinth and daffodils close, lovely to see spring is close. Told DS about the sofa bed being imminent.

@drspouse that scout camp is a great thing.

@Squirrelsandhedgehogs reading your post after so much devastation over the past few years and you are still going still trying to appreciate life is inspiring.

My mood has switched from low to irritated. I guess any change is good. It’s whack a mole worries on repeat. I’ve put my back out moping up the post wash water. There is always more water on the floor than a sink can hold, how?! Grumble grumble.

I’ve finally got round to booking in to see a solicitor for trust/LPA/will/tax planning so I will let the pub know any interesting parts.

@Squirrelsandhedgehogs the amount of mud you have and the water I have there is an alternate universe where they cancel each other out I’m sure!

squirrelsandhedgehogs and hedgehogsagree sympathies on the vast quantities of water/mud. Here it is handwash. Ds uses so much and gets it everywhere. At least it is only in his bathroom though he has ruined his tap and his door handle is going the same way as the handwash corrodes the metal.

Sorry you have hurt your back @HedgehogsAgree and hope the planning appointment helps.

Thanks @NoHaudinMaWheest

Sofa bed is due to arrive in delivery warehouse this week and checked and still planned for that then we get it delivered here. I heard back from DSs former psychiatrist but she replied she can't do anything as not registered atm though its not urgent but realised she just does children. And DS is now an adult in age if not maturity. 😂He keeps filling a large soap dish I have by the bath with water, must be playing with water in the bath like a primary aged child. Just ordered a new rug for the shed and some outdoor cushions as they have the rug on sale and his has got muddy at the edges. The cushions are from our old sofa but DS loves them but they are so worn out now they really need to go. We have a special collection soon to get rid of day bed and mattress to make space for the sofa bed. Also ordered valentines cakes for DS with the biscuit with a message on - last year I got that and he kept the valentines biscuit message for about 4 months. Also discovered he has a stapler in his room no idea what for.

DS continues to impress, his maths tutor is doing a practice Entry Level exam with him today (it's AQA 5930/2, I'm not sure if that's paper 2 of level 1 or if it's a level 2 paper). He sewed on another badge for Scouts with me holding it on tight! He has to make a poster or similar to advertise Scouts but I'm going to ask if him enthusing madly in his classroom would be enough!

Edit: I think it's level 2, as I just looked at the Levels 1/2/3 sample tests.

DD is doing a bit better but she's still taking money (I found £10 in her coat pocket this morning), we are pretty sure it's for sweets as we find wrappers all over the place and she hasn't bought them on her debit card), and she's lost or possibly "lost" her glasses.

@drspouse I hope the glasses turn up.

Great to hear about the maths,

5930 is the code for Entry Level Certificate maths.

The 2 means it is component 2 (the four operations).

It is entry level (covering entry 1, entry 2 and entry level 3) rather than level 1 or 2.

@Squirrelsandhedgehogs I still play with the water when I'm bathing at 46! I find it quite therapeutic.

@HedgehogsAgree the water is unreal, isn't it. We're lucky in that we live on a hill in the village (although not great in icy weather) but the bottom of the road we have to join to get anywhere floods just at our junction. The potholes are awful around our surrounding villages. I took DD3 out on driving practice last night, which wasn't the best idea in hindsight, because she was exhausted and I was stressed and ratty. We were on a village road and it was just full of potholes.

@drspouse I feel like whenever I read your posts lately, I think of a little old lady, sitting in the casino at the fruit machine, feeding coins into the machine with not much faith that they'll do anything, then suddenly grinning with delight as the lights flash and the bells go to signal the jackpot. Your DS has just suddenly taken everything you've poured in and said 'I'm ready!' It's lovely to witness, even if second hand.

DD1 saw the NHS physio today. When I asked for a referral I made it clear to the GP that the chap at the surgery who advises everyone to read a certain book, or just keep it till it gets better, which will be 4-6 months, would not do. So we went to the 'local' community hospital (20 miles). The physio listened to our description of the issues and said that perhaps there were lots of small things adding up and that DD1 was just 'super aware of it', so I thought we'd end up with 'soft tissue, do these exercises, wait for it to get better ' But when she started asking DD1 to do things, she started frowning, then when she examined her she frowned some more. She went away to speak to her senior and came back to say that she thinks DD1 has a curvature of her back and she thinks the 'hip problem' is more likely a back problem that she's compensating for. She is writing to the GP to ask for some imaging (we have recent hip and knee x-rays, but the last time her back was looked at was 2017 and that was a spinal MRI for her brain malformation). She will also ask that DD1 is given more effective pain relief. She is seeing us next week in a joint appointment with a senior physio. The receptionist had to bump two new patients to make a joint space for DD1, so I feel guilty by grateful.

I have also had a call from the grant officer at Motability. He seemed quite keen that we get a 7 seater so that the DDs all have adequate space, and was satisfied that DD1 moving to a rigid wheelchair was good enough reason to not just extend the lease we're in. He asked for me to send in their PIP awards so he can justify a higher grant for a larger vehicle. I'd be happy with a long wheelbase 5 seater Peugeot Rifter, to be honest, so we'll see. He said that in a few days I should get a list of vehicles that they think are suitable, so it seems that he's sure he'll be making a grant, it's just for which vehicle.

@ExistingonCoffee how is DS1? I meant to ask you if you know of anything that helps someone get in the car more easily. I don't think DD1 needs an adaptation, but she finds it tricky to get in and out of her seat in the car, and I'm not sure that a turny circle cushion would be quite enough.

Great DS is doing well @drspouse

Good news about the vehicle @Lougle and the bath comment made me laugh. Its hard to tell with DS whether he's regressed with some of these things or just immature but can work round either. I did google autistic regression and found an interesting article where it said it occurs either very young / older babies or in older teenage years when often accompanied by catatonia. Though they had a study of progress of these older teens who sounded very similar to DS (75% had catatonia) and I think at follow up which was 1-3 years only 5% had a good outcome, think half were still in hospital and thought permanently affected and rest as fair but criteria for fair was really low, it was just better than at your worst so DS would be in fair category. They had used meds, ECT and therapies and said all had been largely unsuccessful. But it did say none had schizophrenia despite some having psychosis. So I need to prepare for a lifetime of dealing with excess mud and water.😂

I have admitted defeat on the mud and been trying to get a cleaner in to help -upstairs is easy and about 10 minutes each time DS uses the bath which is once a day or so. Downstairs its constant and we do it once a week and luckily DH often does it with me but you could spend an hour a day doing that and there's lots of physical work to do in the garden we need doing ideally by end of March. The excellent cleaner we have had occasionally in the past has not responded to this amazing job offer and can't say I blame her though wish she would have at least replied but tried e-mail and text and its been 1.5 weeks and been read so must be a no. So I tried three more cleaners - one said they were too far away, one didn't respond and one is coming on Tuesday for 3 hours. We will see how they get on, think from her Facebook she may be Ukrainian so really want it to work out unless she wants something better. DH has said weekly and that could be good as we soon can be doing the garden 3 times a week once the days get longer.

Still no further update on the sofa bed but should arrive at delivery place tomorrow or Friday.

DS did all of the practice paper in 45 mins solid. Very impressed with him. Tutor is going to tell (ask) school to enter him for the exam.

@drspouse well done DS. He has come on leaps and bounds.

@Lougle finally! Someone is listening to you and DD1.

If you don’t think a cushion would be enough, I think you are looking at an adaptation to one extent or another. I’m not sure there is anything in-between.

You can get transfer plates/boards. These extend the side of the car seat so you don’t have to move as far into the vehicle before sitting. They come in manual and electric versions. Often used for transferring from wheelchair to car seat but can be used when not using a wheelchair.

You can get extra handles added to the vehicle if you think those would help DD1 get in. There are a few different types/placements. For example, some have a handle on the back of the seat in front. Whereas others have one on the car’s side panelling &/or roof.

You can also get a step added to some vehicles. Although some find this harder because it can require more balance.

DS1 has a swivel seat that comes out of the vehicle.

DS1 is home and doing well.

Hmmm... Things to think about. I did get as far as phoning the adaptation assessment place but the lady was very unfriendly, said she didn't think they were our centre, I needed to search the website (I had) and that it was probably Oxford. So I said that I'd talk to Oxford but they weren't a full time centre, and she triumphantly said 'Yes, she's not in until Monday.'

I was a bit put off and tbh, I ticked 'no' on the adaptations section of the grant form anyway, so I expect it's too late.

@Lougle disappointing to hear the woman wasn’t friendly. It’s not too late. I think Oxford probably is your nearest centre who look at passenger access and seating. To get some ideas, you could look at/speak to adaptations companies directly. Look at those that are part of the VAIA. I know Chapman Car Care have previously done adaptations for someone in a city near you.