Neurodivergent parents support thread

[thewingedthreadstarter]

Following on from some discussion in the neurodiversity support thread, this thread is for ND parents to discuss anything related to parenting.

Being a parent is challenging for anyone, but those of us who are ND have a whole other range of difficulties when it comes to raising our children. Whether your children are NT or ND, whether you need advice or just want to vent or share an experience, just dive in

Masking, what a mixed blessing. Good to be able to get by and pretend? But costly in terms of energy etc
But from a aprent's point of view it can be hard as you have years of teachers thinking you are wrong about your child, thinking you are exaggerating, being overprotective, being negative, deluded.

I have just filled in DD's assessment form and said to DH will you have a good look at the list of problems as she has nearly everything and I feel like they will think I have munchausens by proxy to suddenly be saying help

Helena when my youngest DD had her assessment, the psychologist said the teacher's answers indicated ODD even though she thought she hadn't seen anything of concern. Some behaviours that the teacher thought were completely innocuous meant something else to the psychologist. Maybe something similar will happen with your DD's assessment. If the service is experienced with assessment surely they must know how masking manifests at school and be on the lookout for it.

I think I may have found a school for my eldest DD. It's a smaller school that I didn't really want her going to because of a narrower curriculum and fewer opportunities, but they are good at managing anxiety and are willing to give her whatever help she needs. She can even have a modified timetable if she needs it. If 3 lessons a day is all she can cope with, that's all she'll be expected to attend until she feels she can do 4, then 5, and so on.

Oh darn. We had our meeting with the school and the counsellor thinks my DD isn't ready. They'll accept her if we want to try but they feel that she is likely to fall in a heap. The school wants her to have therapy for her anxiety and maybe depression before trying to send her there.

So ... homeschooling it is. Now I have to confront my own issues, like rubbish executive function, and not coping well with having to be around other people all the time, and having to connect with other HE families to get access to resources.

Wings The last time ds1 was out of school, from Easter last year until December we barely did anything. He absolutely did not want to go to the home ed meetings on offer. We mostly hung out together, went on walks, watched and talked about tv and movies, read books and analysed them and kept up with maths and science. By the end of November it was clear he was ready for school again. We've had some troubles settling in but last week he said he was really happy and really enjoying it.

Don't feel you have to throw yourself into the home ed world immediately.

Maybe some time to recover and regroup makes sense.
Not sure where you are Wings but my experience of UK home Ed is, depending on the group, there is a lot of ND in kids and some parents. The NT parents are independent minded by nature.

The clocks changed over the weekend. I set alarm but didn't change time. We all got up late and DD's day unravelled from there as she just can't rush, especially to school.
We did her filing yesterday but I think that made things worse ironically. I think we're looking at a break from school too.

Looking forward to a glass of mothers day present later.

There is a requirement when registering for home ed here that we show that we can deliver a "quality education". I won't be pushing her but I'm aware that I'll have to justify what I do with her. Gotta love that feeling of being watched when you have social anxiety

We have managed to avoid daylight saving so far - it's a stupid idea in a tropical/subtropical area - but I recall many years ago when we had a trial before a referendum on the subject. I swear it took me most of the summer to adjust to it, then just when I was starting to feel okay with it they changed it back. There is a new political & business push to introduce it which I am not happy about.

WRT daylight saving and clock changes - I meant to add that I can see how it would upend a child's day, especially one with SN who needs predictability and routines.

My DD is being manipulated and taken advantage of by her best (and only) friend. Trying to explain it to her. Absolutely heartbreaking.

Helena how awful. So hard to explain and understand. IME this kind of friendship nasty politics is baffling and heartbreaking as you say.

Wings we have a surprisingly liberal home ed framework in the uk although there have been many attempts to challenge it. The law was first framed to enable aristocracy to educate their kids however they liked and not intended I think to allow families to decide what's best for them

Oh that sucks Wings. Maybe there is leeway in the law? If you google unschoolers/autonomous educators in your country they may have found workarounds. Though equally depending on how draconian it is they may not.

Helena Your poor dd

I did a separate thread because it's a massive drama. I can't understand it, she doesn't stand a bloody chance.

In good news our business is on its way. We have negotiated a good deal on an office. We have 3-4 projects in the pipeline. Hoping to make our first hire after Easter. Terrifying but I know we can do this.

Aaaaargh
The centre we have asked to asses DD for dyslexia/ASD/ADHD require a GP permission form, even though we are self funding.
Our GP has had the form a month. When I rang GP last week (3 phonecalls, waiting in bloody queue) they asked me to send another form.

DD has 13 exams this summer as she is in y10 and we won't get the assessment back in time now to have access arrangements (extra time, lap top, quiet room).

Meanwhile she is getting really frustrated at finding it so hard to do revision. She is full of twitches and tics. Her friends keep saying that she is smart so why isn't she working.

Thanks for reading.

Why do I get the sense that GPs in the UK tend to be rubbish? I see so many people saying their GP loses forms or fails to follow up on things. Are they just overworked?

Your poor DD. How do you think she'll cope? Thirteen exams - why so many?

Mine is at a robotics class so she's happy for the moment. This whole thing with trying to get a diagnosis for her is not good for my mental health. One minute I have doubts, then I think about it and I'm sure, then I feel guilty for not being able to express what I know to the paed.

Plus my father shouted at me yesterday to just force her to go to school, because apparently she should be spending all day with kids her own age. I know it's because he doesn't understand either ASD or anxiety, but it's still made me feel like rubbish.

I'm sitting in the library waiting for her and there is a woman behind me (back to back seats) talking on her phone. I can hear every word the other person is saying. Struggling to not say something. I'm not giving up my comfy seat.

I don't know how to cope with my children. DD2 is howling because a bit of muscular strain in her shoulders has apparently incapacitated her for the day. DD3 is slouching around like someone's let half her air out and moaning that she feels sick. I've spent an hour trying to get them ready for school, while they cry and complain and roll into balls so I can't force them to put their uniforms on, and I've had enough. I've just told both of them to go back to bed and I'm drowning my sorrows in strong tea and chunks of gorgonzola. I feel like a crap parent.

Wings
Hope the rest of the week was better?

GPs are overworked, lots of vacancies etc. Still frustrated. May change to a different practice.

The assessment centre rang me today, still waiting for form from GP but suggested this based on forms from school, DD and me:
Dyslexia assessment with ed psych £650
Sensory and organisational issues with OT £650
Attention all/ADHD with psychiatrist £850

Can't afford all those now so trying to decide what to start with

My gut feeling is so with the one you are most sure of getting a diagnosis for. If you are equally sure dyslexia may be best as that will definitely allow extra time and use of laptop I imagine.

Thanks weaver. You'd think a formal diagnosis of dyslexia would be enough but apparently not. It has to be diagnosis of severe dyslexia, plus history of needing help plus lap top being usual way of writing.
School don't do formal exams in first three years which has been good for DD but means she can't have developed history of needing help in exams.
It's all very circular
So we have requested ADHD assessment first. Apparently it's a clause 7 (medical) condition or something so school and exam board have to make adjustments.

Even having the conversations with her has helped her.

GP charged £20 for filling out the form (short) but DH complained that 6 weeks, 2 forms, 3 phonecalls and 2 visits from us does not good service make so they have refunded fee. Just need to do the walk of shame and pick it up from reception.

DDs school do a lot of exams so that they all get used to exams and so they can monitor gaps in learning. She loves exams as they are very quiet and in her words "she can just work and no one is allowed to talk to her" The only thing she struggles with is the time and the fear of getting into trouble for something.

She is hugely struggling socially however.

I'm glad they do frequent exams although I would prefer them to be slightly less frequent. It will allow her to work out how to work properly to time before she does anything important. They don't put a massive focus on them. The kids have individual targets that seem very realistic and as long as they are roughly hitting them they don't pull them up. DD flunked a couple of the first ones and they just looked at the targets and adjusted where they needed to. She hit or exceeded target every since.

We've also had a few merits and things from the good work she's done which she loves.

I like your DD's take on exams as chance to have nobody speak to her. I will share it with DD.

School sent me the exam prep timetable yesterday after DD wouldn't go into a walking talking mock exam (where teacher talks kids through paper) in the hall as she hadn't had enough time to prepare for going into the hall.

I think if school was like your DD's school we would have had more chance to have a plan in place.

Does your DD do any out if school activities? Mine have liked things that are a bit social but there is stuff to do like drama or orchestra. ASD DD liked being at things where there were slightly older kids or a mix of ages.

I can't get her to do social things generally. She went to a youth group at our church for a while but she's too old now (it was a primary age run and she went with her siblings) She can't cope with the secondary age one. She has however made friends with a girl her age who is autistic who also won't go so they hang out together whilst their younger siblings go to the group.

DD is having suicidal thoughts and starting to Self harm again (although only mild it's still an issue) she's bashing herself and running into walls. I have behavioural paychologist appt in 4 weeks but if anyone has any advice
Or knows any resources they can point me at I'd be incredibly grateful.

I think it's because her "bff" is being a bitch again. She's leaving her alone at lunch (DD won't move tables so if people don't sit with her she sits alone) and when another girl came to sit with DD the bff got stroppy and threatened to never speak to DD again unless she stopped talking to this
Other girl

weaver sorry to hear that. It sounds really tough. Those "friendship" politics are awful. It's real in group out group horrible stuff to deal with if you are just a nice, not political kid.
Sorry I've not got any helpful suggestions only sympathy

It's hard when she doesn't understand what she did and I can't explain because she did nothing.