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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.

@NoHaudinMaWheest I hope it all goes well. I don’t think you are overprotective.

@ZairWazAnOldLady when you are looking for the feeling you have done well, are you looking for good parenting (which I think you more than offer) or are you looking for perfection (which I don't think exists in terms of parenting)? I think it is easy to slip into thinking you (a general you, not you specifically) haven't done well because you haven't been the ‘perfect parent’. Who has? It is easy to look back in hindsight and wish you had done certain things differently. You did what you thought was right at that moment in time.

We have a cleaner. I could not manage without her.

We have gone down the Deputyship route for DS1. It is important for him. I also wanted to ensure no-one else applied for deputyship first or applied for a personal welfare order from the CoP without going down the deputyship route. I have seen too many cases where this has happened and parents are pushed out &/or it takes more work to challenge the decisions.

I don’t know if any of you saw it, but there was an article by ITV earlier this week about families prevent from seeing people with LD.

DoLS doesn’t apply to DS (not 18 yet, and he lives at home), but a DOLO application has also been submitted. This has been made because apparently it will come through quicker than Deputyship, which is taking a while at the moment.

I need to follow up DS1's appointment yesterday with the department we went to. It could have been handled so much better.

@ZairWazAnOldLady sounds like hanging out in his bedroom is what DS needed I really wouldn’t beat yourself up too much. We can all only do what we can with the energy with have. As long as it’s done with kindness and love, people remember how they felt but not necessary what they did. I’m with you on the decluttering I feel like we just have way too much ‘stuff’ I listen on off to the Dana K White audiobook on ‘Decluttering at the speed of light’. It completely resonates as someone with a ND brain & being bought up by parents who were both born during Ww2 the hang onto & mend generation I struggle to part with things that “could be used for…” I did manage to get 3 sacks of clothes out of DD2 wardrobe this HT & did a tip run. So I keep trying to do mini blitz when my energy & clarity of mind hit. Id dearly love to downsize in 5yrs time & partially retire that’s my driving need! Im dreading dealing with my parents home as it’s “full of stuff” I refuse to do that to my kids. My mil has completely cleared out & she’s so so much happier pottering round her neat tidy bungalow in her 70s.

@ExistingonCoffee i hope DS1 is happier today and no more hospitals for a week or so.

If I understand correctly, the government is proposing a reassessment for secondary transfer? How many children do they think will have grown out of ADHD, ASD, developmental language disorders, dyslexia, etc by 11 - especially as they are just about to go up to secondary school, where there are the extra stresses of numerous teachers, classrooms and increasingly abstract language to process? Do they learn nothing from reading statistics about CYPs with those specific learning difficulties, ending up as school refusers and having breakdowns in their teens, as they can’t cope with mainstream secondary? I rarely saw any here given the support they really needed in mainstream secondary; that’s why so many parents I knew went for specialist schools!

When DD1 was in the SEN education system
here, she and children like her with significant speech and language disorders, ASD, dyslexia, whatever had reports by the SALT and LA ed psy for the phase transfer annual review anyway. The older she got, the better able they were to assess how severe her difficulties were; they never got better?

We're at the snow centre and DS had half an hour of I'M NOT DOING IT YOU CAN'T MAKE ME then 10 mins of I'm nervous and then stride off with the instructor. DD still on the slopes with her group but DS instructor says she saw her linking turns which is better than she has done before.

@BlueandWhitePorcelain I don’t think it is about DC growing out of needs or a formal reassessment of needs. I think it is about DC in phase transfer years transitioning to the new system, whatever the new system will be. Just like when SSEN swapped to EHCPs and how the Welsh system moved over to IDPs. They started with ‘new’ DC and those in certain phase transfer years.

Ah ok - I’ve not had much time to read it this week!

A funny old day. DD didn’t go into the solicitor’s office but sat on the bench outside and they came out to her. I stayed inside and let them get on with it. The woman verifying DD’s ID was also 18. DD then spontaneously went into a craft shop 5 doors down. Watching DD through the window remove her hat and hood in preparation to have ID verified made me proud. It wasn’t necessary but DD was doing it unprompted.

Funeral is over DH has slept a lot this evening.

@ZairWazAnOldLady we spend our lives trying to make our children independent and when it happens oh what an ache that must be.

@BlueandWhitePorcelain how is your DD getting on? Is her baby due soon?

I took her to two antenatal appointments this week. I ask her, how she is and she just says not good. She has gestational diabetes so the baby is on the 94th percentile. Given her big fear is the baby having brain damage, DH advised her to have a planned c section, to reduce the risk of a difficult birth, due to the higher risk of shoulder dystocia. It’s arranged for March 5th, but she’s flipping out at the thought of it!

A friend had a difficult birth with shoulder dystocia and DC had SEN. She spent about 20 years, worrrying the birth had caused brain damage. So, if I were DD, I’d prefer the c section!

Thanks @ExistingonCoffee sorry hospital was difficult.

Thanks @ElizabethBennetsFineEyes hope you can get things sorted.

Hope the birth will be OK @BlueandWhitePorcelain Its scary with your first. I remember being desperate to avoid c-section but the induction took 3 days and nearly ended up at c-section at the end but didn't. DS was so easy by comparison with a water birth.

DS took a bath last night, four very muddy big footprints on the floor, mud in the bath so cleaned that. It only takes 10 minutes so that's not too bad and good he is bathing so much. Getting the weekly fruit and veg box and he's eating well. My passport has been done so am now able to book our holiday - flights for Sri Lanka are booked, very exciting. Am now planning hotels / transport / trips - have a plan. Hopefully gardening this afternoon, more work on path.

Ooh Sri Lanka how exciting!! We have finally decided on the West Country for the summer in an attempt to have a cheaper holiday but the UK is so expensive! Looking forward to it already. Half term has been lovely and not looking forward much to work next week. I have so many events and activities to plan, it feels exhausting, but I am sure I'll feel more positive once I get in. The big excitement here is the curling gold medal match tonight! @BlueandWhitePorcelain good luck to your DD. I only gave birth once and it was pretty straight forward but the after care was tough, I tore quite badly and then a stitch fell out too soon so lots of salt baths!! I remember carrying a water bottle round for months and people saying I must be thirsty! Like nope! All worth it though. I hope she goes for a c section if she's nervous about various things.
My cat brought a mouse in at 6am this morning and the only things I found were the brain and organs. He is now relaxing in his box very smugly!

That's nice to have a holiday planned @ElizabethBennetsFineEyes

DH and I did 3 hours gardening and then I cleaned downstairs floor. We have squirrel and hedgehog path complete so 2 out of 3 paths done and 3rd one started. I dug up some of the old paving slabs and did some weeding and cleaning. It was nice in the garden with the silkies and the solar dandelions came on, lots of bulbs including many irises are appearing. Got flights, two hotels, a driver, 2 safaris booked now for Sri Lanka. DS had kept the shed nice, no idea what's happened to the rug still but we have another one. The living room sofa is staying in good condition and resisting cats and asd boys so far. We should have the coffee table and side tables arriving tomorrow.

@ElizabethBennetsFineEyes west country is beautiful have fun.

@Squirrelsandhedgehogs looking forward to reading about your trip.

@ZairWazAnOldLady your DS probably needs even more time alone following seizures and meds changing (making big assumptions as I have no experience) but all the growth in life/food/college probably warrants a good old whack of alone time.

@BlueandWhitePorcelain will this be your first grandchild? Really positive that DD is attending anti natal appointments. A new life is such a beautiful and exciting thing. Giving birth is scary and how that happens is so subjective. I hope your DD gets settled with her birth plan.

West Country mention has made me think of a meet up. Should we plan one? Or too early in the year to be thinking of it?

@ElizabethBennetsFineEyes i tried visualising a mouse brain and why it might be rejected. I’m on series 2 of Stranger Things.

@HedgehogsAgree No, we have two grandchildren by DS. DS and DDIL were so different during the pregnancies and births - although they weren’t entirely straightforward! DDIL is the youngest in a very large family and has seen most of her siblings have children, so she has more practical experience? DD2 still won’t buy anything for the baby or things like nursing bras. Her OH is getting stuff for the baby.

@ElizabethBennetsFineEyes - can you explain to me, what problems arise with pda in secondary school please! I understand autism very well, but know very little about pda in reality, other than the bare bones of what it is.

Sure. Pda is essentially a nervous system issue where feeling not in control causes anxiety, as I understand and experience it. It makes us want to do the opposite of something that is phrased as a demand. So instead of saying get your coat now, I used to say oh its cold out I'll get my coat and I'll get your's too shall I. That sort of thing. So at school, which is based on hierarchy and being told what to do when, pdaers can really struggle. DS' teacher this year is mostly great and reminds her TA team often how to approach DS, e.g. would you rather do the writing now or the comprehension? Letting him have movement breaks. Low demand. Picking battles. If he is told off for lots of little things, he will escalate and get very upset. Threatening punishments also do not work and talk of being good is not helpful, but rather being safe as otherwise he'll thuk haha I'll see what happens when I'm bad. So we phrase everything in terms of trying our best and being safe. If something is a rule or is not allowed adults have to follow it too otherwise its not fair e.g. we can all only eat chocolate after meals. Dealing with other kids not being fair can be tough.

As an adult, if someone tells me to do something, I get very anxious and can feel it rising and makes me get very upset and like I want to do the opposite, probably why I don't get on well with micro managers!

@ElizabethBennetsFineEyes we try to use declarative language with DD, I’m getting better but still trip up a lot. ‘Do your best’ was an interesting one for DD as she took it literally as needing to give every ounce of her best to a task when what I actually meant was if you can’t/don’t finish the task or if it’s mediocre that’s more than ok. Turns out that fuelled perfectionism and panic at not having the energy to do her best at a task. I agree with you that the right support for PDA in educational settings is vital and makes the difference between accessing education and the stark contrast of complete refusal. Im very interested in how to support PDA have you got any tips that work well?

Interesting, for DS do you best means that he will try to engage and not muck around! But he will get upset if he us trying hus best and then a TA picks him up on lots of little things. Then he will start being silly / dysregulated as he is upset. Top tips? Take traditional discipline and flip it. Staff need to create what feels like an equal partnership with pda DC. Non negotiable need to be explained in terms of fairness or safety e.g. we dont go beyond the fence as that is the safe boundary, we all have one turn as that is fair. Because I said so does not work well as a response! DS has lots of choosing time between lessons where he can decide what he does from a menu of activities, which helps him feel like he has control and agency over the day, and lessens his anxiety. He is also allowed lots of movement breaks. The demands still catch up with him after a few weeks and I regularly have to remind staff how to use pda friendly approaches and pick battles, use humour etc. E.g. if he wont put his wellies on, I would give the wellies a silly voice and ask why dont you want to wear me etc. We have a whole range of pretend people that I use to demo social expectations and use humour to explore these (e.g. a baker artist who can't get thr hang of dinner parties and always brings the wrong food!) TAs recently told him off repeatedly during one day for not saying please...then wondered why he melted down at the end of the day over 'nothing'...luckily the teacher this year understands the culmination of demands and picking battles. Its hard because of course saying please is important but its about building positive relationships and choosing how /when to broach things.

Staff in school i mean, but also.parents at home!

@ElizabethBennetsFineEyes we also have a huge range of characters! Great reminder to use silliness and humour I’ve let that slide a bit as DD has got older. I’m Cam from Modern Family when it is tense here 😆. I’m certain my DH experiences PDA, having his own whiteboard on the fridge has been amazing for our marriage. No more guessing what I want or being asked directly. Culmination is a tough one isn’t it.

Really good summary of PDA @ElizabethBennetsFineEyes I was nodding along and smiling at using all those techniques with DD2 and half the time not realising I am doing it which really does highlight why she’s so much happier as EOTAS / learning at home. It does worry though that at some point she will need to learn to cope with more mainstream communication to survive in this world. Interestingly I’m noticing more and more how much my oldest DD struggles with aspects of this but more so rejection sensitivity hugely quietly impacts her. Shes nearly 19 now and has a p/t job but has learnt lots in the last 6 months out of education for the first time in her life just “adulting” it’s really hard. I’m quietly very relieved she didn’t bounce straight into University as she would not have coped at all. She’s not interested in any form of diagnosis but has so many overlaps with her sister.

I'm so tired. Just so tired. What do you do when your child just doesn't do what they say they will? The psychologist's latest strategy (on advice from the intensive behavioural support team) is that I use Co-pilot to plan SMART goals for activities. DD1 was enthusiastic.

So we tried it. 'Set a SMART goal for a trip to the beach to look for sea glass." Then, I refined it with "I use a wheelchair for distances and get tired very easily."

Her goal was to look for 3 pieces of sea glass for 5-10 minutes. She was keen and enthusiastic.

We got to the beach and she refused to look for sea glass because 'it isn't her thing' and just obsessed about whether we could have ice-cream, tacos, hot chocolate, etc. Just a constant stream of moans and demands. Point blank refused to join in at all.

She's getting so angry. Kicking and hitting doors when we try to put boundaries in about food (I understand her medicine is making her hungry but she's already overweight now and we don't want to get to a situation where we use dieting because of her ED history). As soon as she's finished breakfast, she's asking what's for lunch. She starts nagging for lunch at 11.15. Mid afternoon she wants a snack and immediately starts pondering what we might have for dinner. She gets furious if we have dinner later than 6pm (my parents eat early), but as soon as she's had dinner she starts obsessively talking about how exhausted she is and it must be bed time. We try to keep her up until 7.30pm because she needs consistent sleep/wake cycles but she's angling for bed by 6pm.

She's rapid cycling between mood states and we went through 5 different versions of DD1 by 10 am on Friday. From agitation because she was anxious that I'd make her late for her appointment, to anger, to euphoric 'I haven't had a single bad thought today', to obsessive chatter about assistance animals, why she can't have an assistance dog (she gets angry if our dogs try to comfort her when she's upset), to whether she could have an assistance snake, then suddenly it was 'the world is ending' and we had long ruminations about how she was having terrible thoughts, was seeing and hearing things, was so scared, etc.

I feel like a terrible mother because I'm finding it so claustrophobic (she is 'on me' with demands and questions from the moment she wakes until she goes to bed) and I'm feeling so controlled.

I can't make it all about her. I have other children. I also know that it doesn't matter how much I buy her, how many times we go to Smyths, or order things on Amazon, it won't really satisfy her and she'll just want the next thing.

It must be so hard to be her, but it's also hard to be her mother right now.