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

I'm mostly just placemarking right now so will use this post as a little introduction.

I'm fairly confident I'm autistic, though don't have a diagnosis yet. I have two boys (four and two). The eldest has an ASD diagnosis and the youngest is being assessed. I struggle most days.

I'll mark my spot with an introduction too. I'm Faith, I have ASD. One DD who is 3 going on 4. She's not diagnosed, yet...she definitely has sensory issues but I'm not sure about other needs.

Marking my place. I'm a newly diagnosed asd mum. My dd aged 8 is under assessment for asd and I'm pretty sure also dyspraxia. I also have a ds aged 2.

I've found life increasingly more difficult since having children. Particulary since the second came along. I just never get a minute to myself. And I so need that for my own health.

Hi I'm a relative newcomer to the board.
Have 4 DC now in late primary up to uni. They all have dyslexia as does DH.
DC1 NT (apart from dyslexia), DC2 ASD, DC3 adhd/PDA?, DC4 sociable and sensitive

We have limped along without other formal diagnoses but DD's recent quest for diagnosis of ASD has thrown up all sorts of questions for her and for DH and myself. My family has a strong history of ASD and DH adhd.

Not having a diagnosis has meant DDs are now facing GCSE and college without the right adjustments in place and they and I am finding it really tough

Marking my place.

A full house of neurodivergency here although only one with a diagnosis.

ds1 was fairly easy to parent in that he mostly just did his own thing and when he talked incessantly I would just zone out and he never noticed! He still doesn't notice that and he's almost 13!

ds2 who was diagnosed at 2 was a different matter. He screamed constantly from birth. He had to be in constant physical contact which I've grown to accept but hated. And it was only contact on his terms. He cries, whinges, shouts, bangs (until he was 4 1/2 he used to spend 40 minutes kicking the wall before going to sleep), and needs constant input if we go anywhere to keep him even tempered and actually walking. I can't zone out at any point because he checks I'm looking at him and demands constant verbal responses. Though thankfully no longer tells us exactly what those responses should be

So that intensity for me who likes to spend a lot of time alone and thinking is pretty difficult!

Having said that about ds1 when he was little. He did have a wanting to die meltdown this weekend about going back to school and it set off a meltdown in me. Usually I'm pretty good at dealing with things but he's bigger and angrier and was actually cuddling ds2 at the time and ds2 hearing that (and not knowing how much he understood) made me just overwhelmed. Possibly my worst parenting moment ever.

ds1 did say he felt better and more calm afterwards. And he doesn't show any other signs of depression or anything. But it was very self hating. I'm hoping his assessment will help him, I can't imagine it not pointing to autism. I think he'll feel better and calmer with "an identity".

Marking my place, I am autistic and a mum to 2yo DD. She is very like me, which may or may not mean she's ND. I'm sure she'll inherit some of my behaviours with or without the underlying neurology.

We started potty training today. Is it too early for gin?

I've yet to tackle toilet training for pooping with ds2 (age 5). The couple of times we've attempted it so far led to days of withholding. I've read so much on here about constipation issues in children that I am scared he will go down that route which seems a much worse choice than him asking for a nappy.

I have four: DS (21), probably undiagnosed ASD; DD (11) just diagnosed ASD; DD (10) NT and unreasonably sociable; and DD (8) NT but with ODD and some processing issues. The two eldest are much like me and don't give me much grief. The younger two give me more than their fair share.

Anti

Laura it's never too early for gin when you're potty training. I remember those days and I'm very, very glad I will never have to revisit them.

After my DD's ADOS yesterday I spoke to her school counsellor this morning. If I can get a paediatrician to tick off her diagnosis she will be able to get access to more support at school and some accommodations that might make her life easier.

I don't know how much longer I can cope with her morning dramas. It's not just dealing with her morning anxiety, it's the fact that I can't just wave her off most mornings, or even drop her off and drive away. I physically have to take her in, talk to people, be seen. Teachers walk past when I'm trying to coax her as far as her classroom and they always want to make eye contact or ask how we are or why I'm there, and it's exhausting. There's also always the feeling that I'm being judged, either for being there at all or for being a crap mother, or for my appearance on bad mornings when I've run out of decent clothes and wasn't expecting to have to go in to school.

Also marking my spot. I have 3 kids but only the eldest is ND. She's currently in the referral system for autism assessment. I'm 99% sure I'm autistic as well due to the fact that DD is my clone. I did I think 3 online tests and every one comes up positive for aspergers. I can only tick off 80% of the aspie women traits I found on a chart.

We were doing ok until we hit high school and the shit has hiteth the fan. DH has booked us an appointment to see the head of year and DD's form tutor on Monday to see what else school can do without a diagnosis. Now she is actually on a waiting list for the occupational therapist, behavioural therapist, speech and language therapy team and is starting a course with the physiotherapist I'm hoping we have enough to get them to make adjustments. Last time we just had a vague "we sent in a tonne of paperwork"

anti that melt down sounds especially tough. It can be so hard to weather a meltdown whilst trying to conceal our own. Your potty training hunch is probably right. Have I have found the ERIC website useful. It's about enuresis and encropresis rather than potty training but helpful I thought.

I just snapped at DD 18 because she was hungry . I was tired and hungry after work and sat with a cuppa when it became clear she was ravenous. She hadn't liked her lunch and then got "too anxious about her assignment to eat." I snapped that not eating makes me feel more anxious and crossly made us some dinner. She was great at making snacks at 8 years old. I said that too. Not helpful

Helena DD's head of year said they would make what adjustments they can while we wait for assessments as her needs would be the same. Except the quiet exam room is full . Good luck with the meetings.

Our mornings are tough with DDneeding 5 minute prompts. Teen so too old for the PDA stuff about "So trousers or shirt next?". DH spends every morning either cross or inexplicably surprised. It really irritates me as I have to deal with him ranting (overloaded/stressed) and DD looking dreadful as she literally drags herself into getting ready to go somewhere she doesn't want to. Of course if I start shouting at DH, DD the dogs or DS it all gets much, much worse.

Wings could school have a regular person meet you and DD to help with the transisiton. It sounds really hard having random members of staff trying to help.
Sorry if that's a bit obvious.

Gin I might be being naive as mine is only a toddler and it's a long time since I did exams.... but....

quiet exam room

surely that's a prerequisite?! What's the alternative, a noisy one?

Gin she does have a counsellor she can see before she goes to class but he's not always there. The teachers we meet along the way when I have to take her in are only trying to help, I just wish I could tell them to leave us alone without being rude.

The school run is such a huge stress point for us. DD is still not capable of dressing herself properly. And I have a thing about not being late, so I'm always stressed. Especially when we have to try every pair of socks because they all feel funny. Obviously, I totally understand the sensory thing myself, but it still drives me crazy.

Then there's the joy of post school meltdown...

wings could you request that at the meeting - that staff only help if you ask them? I'm finding that DDs school like specific requests. At least they write them down and promise to try to make stuff happen.

Laura the external exams are in school hall or gym. So hundreds of kids. Lots of fidgeting, people turning pages over, sighing, scraping chairs, ticking clock, invigilator walking up and down in heels. Then at the end of normal time someone says in a loud voice,

"Time up except for those of you who are entitled to extra time and are choosing to use it." 95% of students pack up and leave. The poor kids allowed extra time then try to refocus and finish. God help them.

DD describes having 360 degree vision where she can "see" and sense what is behind her all the time. It's like she has no filter so the exam room is even worse if she's not at the side or back of the hall. And she has photosensitivity so the lights might get to her too.

Exam halls are horrid, actually, aren't they? Shuffling of paper, scribbly writing noises, ticking clock, invigilators pacing up and down (and sometimes talking!!), the echoeyness of it all. Ugh.

Really crap that 'the quiet room is full' is seen as an acceptable excuse, Gin. They obviously have need of a second one, then, don't they. I'm annoyed on your behalf!

Actually I loved that moment. All the other students left. I'd take a deep breath, smile because I hadn't plenty of time left, then got on in the lovely quiet with the few students left! Best was at uni in a 3 hour exam because I had another 45 minutes. It is an adjustment when everyone leaves though. Worst was (before I had extra time) a 45 minute exam when the invigilator sat eating a frigging picnic! Incredibly distracting!

My DD loves exams. She likes being able to just do things and no one is allowed to talk to her. They do them in classrooms ATM though not the huge hall. It's in between classes she struggles with namely:
Stairs are too noisy, chaotic and crammed.
Canteen is unbearable for her.
She gets lost and confused in the big school.

The other thing we struggle with is fixations. Last week she misinterpreted her homework. The teacher wanted an essay and she wrote basically the conclusion part. Teacher explained and said "ok go home, finish it off and hand it in tomorrow at the end of the day so I don't have to give you detention." She went home finished it, handed it in then stressed for 3 days because "the teacher said detention, what if it isn't right? Will I get detention for messing it up? I think I will get detention when I have this subject again" Etc we couldn't get her to understand that the detention was only if she DIDN'T hand it in the next day and since she did hand it in she wouldn't get one.

Helena, I was (and probably still am to some extent) the same as your DD with worrying about/fixating on things a teacher has said etc. I remember when I was in Year 3 (so I must have been about 7 or 8) the class teacher said if we didn't get our project work finished by the end of term we'd have to do work on the last day of term instead of being allowed to bring a toy in to play with like everyone else.

I was a bright child but always distracted, daydreaming, chatting and found it hard to concentrate in class (all makes sense now!!) so very slow to finish work and I worried and worried about this despite my mum assuring me the teacher just said it to hurry us along and she knew him and knew he wouldn't really single out a few kids to do work whilst others were playing.

I wouldn't believe her and had such anxiety over it. Turned up on the last day of term with my stomach in knots and convinced I'd have to do work...to find I was allowed to play just like my mum had said.

I don't know what to suggest because it didn't matter how much my mum tried to reassure me about that sort of stuff, I still worried.

Hello, nobody in our house has a diagnosis, but there are certainly a lot of ND traits. DH and I are both extremely introverted and have a lot of sensory issues, which makes parenting challenging as we find it hard to deal with noise, mess and chaos! I have two boys who are 10 and 7, and also have sensory issues, DS1 is highly sensitive (as am I). DS2 probably is also, but presents in a much more outgoing "look at me, look at me!!" kind of way. So I'm constantly shushing him, and then feeling guilty that I'm giving him all kinds of neuroses... DS2 really struggles if things don't go according to his plans or expectations.

Mog - oh yes, the school run stress! We're usually on the verge of late, but I'm less stressed out about it these days because DS1 gets himself to school, and DS2's school is less pernickety. Their old school had a late book where the only options for signing in where "medical appointment" or "parent failing to get child to school on time". It was meant to crack down on certain parents who just didn't care, but it got me to such a state of anxiety even at the idea of signing it...!!

Hello Blue it's hard living with different personalities but add in the sensory issues and it can be really tricky can't it?

Bloody GCSEs. Have spent lots of today helping DD learn oral piece in not English. It's on 8 index cards. She is allowed to take 30 prompt words in but we cannot get past 3rd card. We have tried jumping ahead, recording it onto iPad and listening in the car. She just can't organise and remember that much and get the structure right.

Bloody, bloody, bloody hell. She is so bright and sparky and she is going to do crap after loads of work

That's not to mention loads of faffing and procrastinating and making snacks. No wonder as she knows it won't go well. Subject teacher has spent loads of time helping her.

She said last week that she isn't going to do Alevels as they wont suit her. Phew. Btec at college hopefully.

She has theatre trip tomorrow evening for English lit and maths bloody catch up Tuesday evening.

Well, I took DS2 to the barber this afternoon, which has been really traumatic in the past. We went to a different place and a guy who'd been recommended, and it made such a difference! He was really relaxed and it was all nice and quick and quiet - amazing!

But then having pancakes for tea puts everything out of routine, and DS2 was really over-excited, so just wouldn't shut up. We were getting so frustrated with him because it was impossible to get a word in edgeways. If DH or I snap at him out of overload, I then spent the rest of the time feeling guilty about it.

It's sooo disappointing when a treat goes pear shaped because of too much excitement/overload.

I can't work out the best solution to overloaded ND child and overloaded ND parent .

I can usually stay outwardly calmer than DH but sometimes snap too. DH mistakes my feigned calmness for the real thing. But since reading stuff on this board I'm trying to let him know how I feel rather than just shutting down. Now I say "Knees," which is shorthand for I feel so stressed my chest is tight, I feel sick and my knees are actually wobbling.

I am officially Not Coping.

DD1's school anxiety is rubbing off on me. This morning as I tried to coax her from the car to her classroom I had to walk behind her so she wouldn't see me crying. She's crying and shaking, loaded down by way too many books for her little frame, worrying about things like having a late slip and remembering everything she needs for the day, and there I am worrying right along with her because I know she can't manage all the expectations being dropped on her and I can't manage the emotional fallout. There's about another three and a half weeks of term to go but I think I'm going to talk to her tonight about other schooling options. Right now unschooling for a while feels like a really good idea.

It's my first day home alone in ages thanks to sick and anxious children, and I just remembered I have a blood test booked in half an hour and it'll leave me feeling shaky for the rest of the day. Not how I want to spend my very rare day to myself