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[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.

Your children get what they qualify for @ExistingonCoffee what anyone else gets it’s irrelevant.

@BlueandWhitePorcelain oh how lovely that DGD is here. Whisper a little welcome to the world to her from the Geese and I hope things can calm a little for you all.

We took ds to a shopping Mall yesterday. He LOVED it! He wanted to stay and had a blast buying things. This is a totally new vibe so I’m excited to see what we can build from it. It’s an unusual developmental path but the twists and turns are fascinating.

World news ever more horrifying.

The meeting with the psychologist was pretty awful. I told her that I just didn't have the ability to do homework for the Intensive Support Team. She has emailed them.

I emailed the Caseworker about DD2 and EOTAS and she said 'we can meet to talk about it, however she's been offered the Pathways 1 course'.

That's the entry level 3 confidence building course. Not an animal in sight.

@Lougle I’m sorry today has been awful again. I hope the IST can bring something helpful to the table ASAP.

The CW needs reminding just because something is offered doesn’t mean it is appropriate.

@ZairWazAnOldLady mastering shopping is a wonderful achievement. It makes life so much easier.

You are right, DC don’t get provision they aren’t entitled to. A helpful reminder to keep that in mind.

@ExistingonCoffee I have a phone call on Monday, but I have sent an email pointing out that it's the LA's responsibility to identify that a placement is suitable, that the provider clearly hadn't had sight of DD2's EHCP, or if they had, hadn't read it, and that I can't see how she can go from a setting with 1:1 support, bespoke provision, individualised planning and individual planning to a setting where there is group teaching, and an expectation of independence. It will just fail. I've asked for confirmation of the steps the LA has taken to establish that the course offered will meet her needs.

The SW has emailed to say that the psychologist contacted her today and she wants to phone me on Monday to offer direct payments. But I don't have anyone to take DD1 out. Last time I recruited a PA it was a disaster and DD1 completely refused to engage.

Well everything imploded this afternoon. Just too much this week for my boy. I’m kicking myself for not building more gaps into his week. Many many extra stresses. Some unavoidable, some very predictable (family birthdays and sadnesses, some just life new tutor (who is impressive) and oh so much drama. He’s been so amazing but I pressed on with our big trip to the mall and a meal out and should have postponed. I just never get it right.

We are all exhausted. Nothing planned for tomorrow maybe we just slob till the world is more manageable.

@Lougle we use direct payments for a PA that comes to the house. As the years have gone on (probably getting on for 3 years now) we've been able to leave the house and now he's taking DS to McDonald's etc.
We also use them for sessions where we go but he's instructed by someone else in something vaguely independence giving (e.g. 1:1 swimming which definitely improves his independence but also increasing his ability to be instructed/helped by someone other than us).
Would any of those help?

@ZairWazAnOldLady you are so hard on yourself! We never get it right because the world isn't right for our geese. You are, frankly, amazing. I'm sorry that your awesome mall trip has been tinged with overwhelm but hopefully a day slobbing around will give DS the reset he needs. What a lucky man he is to have such a thoughtful, caring Mum who strives to give him all that he needs.

DD1 also had a very difficult evening. A friend invited DD3 and DD2 to an escape room yesterday to give them a break from the situation we're in. She's in her early twenties but DD3 and her are very similar in personality and have developed a really close relationship. It's lovely because she is physically disabled and DD3 can help with loading/unloading her wheelchair, etc., and the friend can drive and has the confidence to go to places that DD3 wouldn't. DD2 has started to be invited, so it's stretching her envelope. But it's a highlight for DD1 that she doesn't have friends and isn't the same. She got very cross and thought that she should be compensated by way of a meal deal/ready meal, compounded by the fact that she had thought that she should have been compensated by way of Costa Coffee after seeing the psychologist. She did not want the casserole and dumplings I had cooked. So I got an hour of angry WhatsApp messages before tea time, followed by an hour of 'my apex (appendix) hurts so much' at bed time.

@drspouse maybe we do need to start slow. It's difficult in that DD1's bedroom is very small, so not really any space for someone to join her. If they're in the lounge, I'd have to leave to get a break but that would mean either going out completely or sitting in my bedroom. I think she'd probably prefer someone younger but I'm not sure someone young would be able to cope with her if she was dysregulated.

@ZairWazAnOldLady Don’t beat yourself up about it. You sound like the best mother in the world to DC! We all make mistakes, despite our lifetimes experiences of DC - sometimes we make a decision in seconds, without thinking it through and it’s a mistake. We are only human, in what are impossible circumstances. Nobody gave us a handbook on how to raise DC - we just do our best.

You are all kind and it is true that I try very hard. I’m just annoyed at myself and worried at the reaction. Ds got very cross and we haven’t really had that before, or at least it felt significantly less manageable. What I must remember is that he is making huge progress so perhaps huge set backs are to be expected. I’m a bit over stretched.
@Lougle have you and dd1 ever been away from home together? I know you’re exhausted but I can’t help feeling you guys just need a totally bonkers reset.

@Lougle do you think someone more specialist than your run-of-the-mill NMW or just above PA could work given time? DS1’s care only works because his carers are more specialised. Your average PA wouldn’t work. Social care can provide the higher level of funding this would entail. Although, from what you post, I suspect DD1 would be hitting the threshold for CHC funding at this point.

I hope DD2&3 enjoy last night.

@ZairWazAnOldLady no-one can get everything right all the time. It isn’t possible. You do what you think is right at that moment in time. No-one can ask more. Everyone has things they would do differently if they could go back in time. It doesn't mean you never get it right. Progress isn’t linear.

On the subject of PAs I’m probably repeating myself but we had input (no cost to us) through SS to help ds learn how to go to an activity with a PA. That bridging service is why it works (and for all I tell you all of the progress there’s a lot that doesn’t work well). We also get a higher rate for the PA we do use. If dd1 can’t use access the support they’ve put in place then surely it needs to be adapted so she can?

Thank you Mumsnetters for the best wishes for DD2. She is a bit better, pain wise though day. DGD is milk drunk at the moment!

I'll see what the SW has to say on Monday. I'm so scared for DD1, in truth. I said to DH that if DD1 realised how extreme she was being, and if someone said to her 'if you carry on doing this, you're likely to end up in residential care...' would she be able to change her behaviour? He doesn't think so. He doesn't think she's in control. I don't think I do either...I don't know.

She's just come to me and said that she thinks her paranoia is getting worse because she keeps feeling like someone is touching her. I just don't know how true it is. I don't know if a) she really is feeling like this or b) she has felt like this in the recent past and thinks that it is what will get her help or c) she isn't feeling like this but has heard about it from somewhere. I'm worried that her medicine is being increased because of her reported symptoms but we have no idea of knowing how severe they are.

I don't want to lose her. I don't want to give up on her. Yet, I'm not coping at all. I can't sustain this level of intensity. Yesterday I had 40 minutes during her waking hours where I wasn't either dealing with her rage/distress or talking about her rage/distress.

@Lougle I think if DD1 could change her behaviour, she would. Not that my opinion matters! I’m not sure what medication DD1 is on at the moment, but is there a possibility the sensation DD1 is experiencing is a side effect of one of them? DS1 has previously had tactile hallucinations with a couple of drugs.

@Lougle, I don’t think DC with mental health problems can help it. DD2’s MH problems are beyond our abilities - she needs drugs (and preferably treatments), only psychiatrists can prescribe.

It breaks my heart that DD1 lives in residential care; but as DH says:

”We have tried looking after her twice at home, and the stress ends up killing us. It’s better for her, if we live as long as possible!”

Then we provide care as and when needed for each other; DD2 and OH; DS and DDIL; and DGC.

@Lougle we talked a lot in the past about our girls and independence and if that’s even possible without significant support. It’s scary but what if residential brings about better health and gives DD1 the intense attention that she needs. If a residential decision is made can it be reversed? As in are you allowed to try before deciding? Is the residential for health care or health and social? Or is it final and that’s what’s making it extra hard?

@BlueandWhitePorcelain oh that’s lovely a tiny milk drunk baby and DD2 is getting more comfortable physically. Is DD2 feeling better now the birth is over?

I have no idea. I don't know what is likely, possible, or realistic. I don't know if we would be completely cut out of decision making.

I don't even know if this is her mental health, her learning disability, her brain malformation, her autism, all 4 colliding in some bizarre way.... She's unrecognisably disordered and chaotic. Her behaviour seems so driven, then it just fizzles and she apologises as if she bumped into you or did something really trivial.

@Lougle no wonder you are worried. Is there anyone that can tell you the different paths? Not knowing makes me go straight to the worst scenario

@Lougle I would revisit the question of personal welfare deputyship. While best practice is to involve family in decision making, it doesn’t always happen to the extent it should. Even when it happens, deputyship provides more protection. Some families do find they are cut out. This seems to be an increasing problem in some areas when family raise concerns - ITV recently ran a story about some families.

Residential placements aren’t always permanent. And some who remain in residential placements find the first placement isn’t their only placement and they move later down the line.

If you were to go down the route of DD1 living outside the family home, I suspect she would do better in an individual placement. Her own place with 24/7 support, rather than a shared placement. I imagine she may well find the other occupants overwhelming.

@ZairWazAnOldLady You are an amazing Mum, hope having an easy day helps calm things down.

Sorry things are so difficult with DD1 @Lougle

DH has been ill past couple of days but hopefully gardening tomorrow. DS ate all the oranges (except one I got immediately) and all the apples in about 12 hours from the fruit and veg box. We are getting less as its winter but his consumption is impressive.

I don't know if we're there yet. I know they'll try to keep her with us, hence the SW suggesting we talk on Monday, I guess, and the Intensive Support Team coming on board. She already thinks we don't love her. If they move her she'll know it's true. I love her so much.

@Squirrelsandhedgehogs his bowels must be as clean as a whistle! That's impressive.

@ExistingonCoffee I think the psychologist is of the opinion that DD1 won't do well in a group home.

How would that even work?? "I'd like my own home with 24/7 support please." "You and every other person. Tough luck."

We don't have money. I can't think about it.

@Lougle its the worst when they say you don’t love them. Of course you love all your DDs deeply.