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

wings Is it your ASD 11 year old not coping? The school should be adjusting to her if she has a diagnosis. If they can't do that there's a problem. Can you think of anything they could do that may help her cope better? Can you take suggestions to the SENCO? Could she maybe go part time for a while so she can adjust more slowly? High school is a horrible adjustment. I remember really struggling with it as well. Every day I carried a ridiculously large and heavy rucksack with EVERY book I owned in it because I was so scared of forgetting things.

We had a meeting with the head of year last week that was really productive. Since DD is in the system now he said he is happy to start adjusting for her because even if she doesn't get an ASD diagnosis she has ASD tenancies and they can and will adjust to them.

Stuff like extra exam time etc is linked to official diagnosis but they have suggested:
A weekly regular meeting with the year 7 mentor who she connects to the best (there are 2 of them) so she can share her concerns or upsets.
All her teachers officially informed that she is under assessment and asked to adjust accordingly eg don't mention detention to her unless it's in the context of her getting one. If she does need to be put in detention it should be done asap so it's done and gone and she doesn't spend days panicing about it.
He is also going to ask her teachers to monitor her over the next few weeks and compile an observation report for him. Apparently they will be asked for this once she gets past the first round of appts so he said if we prep it all now it should speed up that part of the process.

I'm really pleased with how great they have been.

I wish everyone with ND kids had great support. It makes me sad that some schools are so awful at it.

Wings that sounds awful for you both. Some days dd isn't particularly worse but my heart breaks more

HGW you'd hope your dd wouldn't have to do detention at all

Today I rang/emailed Interhigh to see if DD (15) could join mid year 10. Yes they said. So I showed DD the website and we watched their YouTube videos.

She is saying "school has been a constant in my life since I was 4 and I hate it but it is unsettling to think about leaving. It's like Stockholm syndrome but I don't feel sympathy for them but I can't just leave."

I said to think about it and she said "thinking about thinking about it is making feel anxious right now. It's the meta cognition Mum."

Gin that's some quality thinking from your DD. Maybe she just needs some time to get used to the idea without having to actively consider it.

Helena YES, that's exactly what she does with her bag! I'd struggle to carry it, let alone a 35kg child.

Yes it is my ASD 11 year old. TBH the school is trying but there is a limit to what they can do. They can't reduce the number of people she has to interact with, or the number of teachers she has, or the requirement to go places and do things. She already has access to a quiet room, and her teachers are aware and go very softly with her. She's often okay once she settles in for the day but that can take a couple of hours, and the process is agonising. The counsellor wants me to push her until the end of term but how much better is she likely to get in the next 3 weeks? She's a child; I really don't think it's fair on her to repeatedly force her into a situation that she finds distressing when other options are available.

Her dad is no help at all. He apparently "didn't hear" me when I told him about her diagnosis (or mine ) and isn't interested in me giving him any information about what it is or how it affects her. "I've never dealt with anyone with autism" he says, when he's very probably on the spectrum himself. He's basically washed his hands of any decision-making and leaving it all up to me, as usual.

I talked to her last night and told her what her schooling options are (school, distance ed or homeschool). She wouldn't commit one way or the other last night, but this morning when I told her she needs to get dressed if she's going to school she thought about it a bit and then stayed in bed. Her usual style is to not say what her decision is, but to express it in her actions, so I guess that's a vote for HE. I can't say I'm unhappy about it.

Wings that sounds like a better approach than my overexplaining

I like the idea of setting out some options and then seeing what someone does rather than asking what they think or feel.

I really should know better.

at Wings' DD's dad saying he's never dealt with anyone with autism. Obvs he has...

wings Sounds like your DDs dad isn't going to be helpful then. I think if it is viable for you to do HE/distance learning it sounds like it might be the best plan for you both. I've recently started to strike up a tentative friendship with someone who HE all her 3 kids, the eldest of which has aspergers. They do stuff at home but go to HE groups as well. She said a lot of the others who HE have kids with various additional needs who have struggled in the school system. There are a lot of HE resources out there these days.

HGW you'd hope your dd wouldn't have to do detention at all confused

She would never break a rule but she is forgetful. She had 2 brief detentions that she got at the start of term. Both were for forgetting things.

he first was her diary not being signed which is a stupid rule but one which applies to everyone. She had already been let off the first time. This detention lasted about 2 minutes. I think it was more the tutor had to follow the rules for the benefit of others so gave her detention but didn't really want to. He made her turn up and stand in his classroom for 2 mins of her break then sent her away. It did work though because she hasn't forgotten since. I set a reminder on my phone so I remember to do it. I used to forge my mums signature in events like this (with her blessing, she thought the rule was stupid as well) I told DD she could do that but she won't. It's too wrong for her.

The second was homework she completely failed to do because she had written it down in her diary but it hadn't been put on the online homework system that everything else goes onto because it was a sub teacher.

I love the online homework system. It has all the homework organised neatly and shows you when everything was set and when it's due. It also has a feature so the teachers can put attachments on so if homework is on a sheet they attach the sheet so if you loose the one you were given you can print another. I would have loved that at school. Hell I love it as a grown up. We have a parent access as well so we can see what she needs to do.

She's a child; I really don't think it's fair on her to repeatedly force her into a situation that she finds distressing when other options are available.

This has been my philosophy. I've taken ds1 (year 8) out 3 times over his school life to home educate for a time. I am on good terms with the education welfare officer!! Currently he's doing well in a school that isn't obsessive about punishing every misdemeanour which has considerably reduced his anxiety. The signing the diary was one of them he also "failed" at. They had a bunch of different codes c1, c2, c3 or whatever for the level of misdemeanour. And with homework they're more of a get it done/remember it then bring it in next time rather than having to miss a break. He still has social issues but he can focus on his work and those without almost hysterical worry about getting little things wrong.

Tomorrow DD is going to walk all the way to school for the first time ever. It's about 30 mins walk. I normally drop her half way but the friend she goes in with isn't walking with her tomorrow. She decided she wants to walk with her other friend who lives around the corner.

The friend she normally goes with is a girl and the friend round the corner is a boy. I think he was nervous about walking with her as he expected to walk with some other local lads but it hasn't happened. He is a good lad though. I think he gets her better than her female friend does. They were the 3 odd ones out at primary. I know he will look out for her but I'm a bit nervous as she's not great at journeys she's unsure of. She knows the way to walk she just doesn't usually do it.

H all the best for this morning. It sounds like they will be fine. It's scary and exciting when they do a more independent thing

She made it. She wasn't late and she said it was fun to walk. I'm going to try and encourage a mix of walking and driving as the weather improves. I'm really proud of her as I know it's a big scary thing for her and she decided she wanted to do it herself.

That's great news. Well done all.

DD had a "melt down" in school. Her form tutor rang to say she had been crying and had to go to support.
Her account is
English - good mark for content bad for accuracy (can't spell and English now being marked more harshly)
Biology - discussion about leaves and having to write results in grid whilst discussing. White board too bright.
Break time - Welsh oracy assessment. Went badly even though we have really tried for 3 weeks to learn it.
Chemistry - overloaded, cries, leaves room, finds form tutor.

Sooo she is too wiped out to go to drama club this evening which she loves.

We did sign in to Interhigh open evening. I will not ask her what she wants to do. I will pretend I am Wings and wait to see what she does

Aargh it never ends. Now DD2 is refusing to go to school because she's being bullied. The school can't do anything about it because the kids doing it aren't in her class and she doesn't know who they are. She wants to go back to her old school. DD3 is also unsettled by all this and in tears because she likes her new school but misses her old friends and she can't decide which school she wants to be at.

Am I spineless and lazy for throwing my hands in the air and saying they can go back to their old school if that's what they want? I'm at the point of not caring which school they go to as long as they actually go to school. I don't have it in me to physically force them to go to school when they're unhappy.

If they both want to go back to old school is this possible? I guess it depends on the reason why they moved? I can't remember if you said.

They can go back, and I've spoken to the principal to arrange it. They start next week (she said they could start tomorrow!).

I moved them because we moved house and the drive to the old school was wearing thin. On paper their new school is better - more extracurriculars, higher standards for behaviour, presentation and achievement, better resourcing. I thought they would have more and better opportunities there.

I also have concerns about the number of SN children being admitted to their old school without appropriate supports in place. DD3 was showing some concerning behaviours of her own last year because of the violent behaviour of one of her classmates. That particular child is gone this year, thankfully.

I'm tired. I don't have any fight left in me to try to make them stay. In a way I'm also relieved (though the drive to school will be a pain) because this means a return to familiarity. Familiar procedures, familiar people, even familiar problems that I already know how to work around. I won't be expected to people or get involved in school activities. I have my little corner of the school where I can help out without having to talk to anyone much.

Oh dear ... have I let them go back for their benefit or mine?

It sounds like the right decision for everyone. It's OK for it to be better for you too, apart from the drive of course

Email from one of DD'S teachers who is trying hard to help. DD said she was referring to research showing doodling can help if your mind wanders or you are bored.
Am trying not to kick myself too hard for not seeking ADHD diagnosis before now

"she was not giving her reading question her full focus. I know that she struggles with reading, but this was different and she sat doodling rather than giving it her best shot. When I spoke to her at the end, she said that she was bored and that was why she was doodling. I don’t know if she just said that to hide her anxiety, but I did find it a little frustrating. "

Wings Think of it as family benefit if you go ahead. There's too much women should sacrifice everything for children expectation around. ds1 is actually in a "worse" school than he was before but he's currently happy and happy is very important to manage all the rest of life and education.

Had a wonderful parents evening for ds2 last night, he's doing great and even has a friend! It's lovely when the teacher sees what you see in your child, a giddy little hard worker! Makes up somewhat from the rage I had last week of a parent not letting her child talk to mine. It had happened before and though it was obvious I mentally let it go, but it was even more obvious this time. I hope it doesn't happen again because I have problems with keeping my gob shut!

(also ds1 being happy means I don't have to spend all my time firefighting)

Hear hear to not having to put out spot fires in our children's lives.

That's great about the parents evening Ant. I'm sure he's picking up on that vibe from the teacher as well. That parent needs a slap with a wet fish.

Gin is there a time limit on when your DD can decide whether to stay at school or switch to Interhigh? Does she need to see out the school year?

Ant I'm carrying around a bit a rage at that parent. Trying to think what you could say but the gap seems huge if someone can't even pretend to be civil in public never mind tolerant. Grr

wings interhigh said she can just join at any time. The night we joined in with the open evening (online and I only just saved myself the embarrassment of asking for the address) was the day of a big meltdown in school so she was exhausted.

I think she's worried she won't be able you focus on the online lessons but I don't think she understands how much stress the noise and chaos in school causes her. I will have a chat with her over easter.

School still saying she can't drop Welsh. She has dropped RE and now they are suggesting another subject. Gathering my courage to write to head saying we are withdrawing her from Welsh and are prepared to engage in formal or legal process if needed.

I find it soon hard to make a fuss. My body goes so tense and I ruminate on it all day and at night

Parents of ND children..... are there any advantages / disadvantages to early diagnosis? It is beginning to be noticeable that DD doesn't behave like other children - she can't stand still, she jumps and flaps, for example, the flapping is probably the most noticeable thing but there's lots of others. She's very verbal so no issues there but does disappear into her own world and nursery complain every so often that she's "not listening" - I don't think she is "not listening," I think she's not processing.

DP thinks it's far too early to tell and is very opposed to pathologising behaviour that's normal for DD. I'm not sure whether a diagnosis at this stage has any value to the child, or whether it's more useful to NT parents struggling to work out why their child is flapping than it is to the flappy child. WWYD?

Laura DD is just starting the assessment process and she is 12 and in Yr7. We didn't see the obvious signs until last summer. She had some issues but we put them down to grief and other circumstances at home. School gave her some coping mechanisms and she was mostly fine. It doesn't help that I was unaware of my own autism at this point so to me it was all normal.

My problem now is that she was referred in August but we are still waiting for the initial appointments. The process is very long. In November we were told we had been rejected by panel in October (yes they took a month to tell us she had been rejected) We then had to send a lot more information back. In January we were referred on by panel but we are now in March and all we have are 4 letters saying she has been referred to the occupational therapist, speech and language team, behavioural therapist and physio.

The only appointment we have had is an assessment for physio who have said her motor skills are mostly fine and have given us some exercises to do to help with the things she struggles with. I don't even have an appt date for any of the other services.

My concern right now is that she's in a school which is very big, scary and overwhelming for her and without that piece of paper they are limited in what they can do. We are incredibly lucky in that the school are putting some things into place based on the fact she's in the system but I can't get SENCO properly involved until we have that diagnosis.

I wish we had seen it sooner and perused it earlier. It definitely would have been much easier to start secondary with that piece of paper.

laura my DDs are being assessed as teens due in part to DH'S reluctance to label them and me having similar issues so things seeming normal for us. Also we knew they were dyslexic so the processing issues and finding school stressful had another explanation.

Has it helped them not be autistic or not ADHD?
Did it help them avoid social/anxiety issues?
Did it mean that leaving home or doing GCSES has been easy because they didn't have a diagnosis?

Of course not. In fact having that explanation earlier would have been very helpful.

I now have the issue that it seems DD has got her masking in school down to a fine art. She is talking in most classes as part of class discussion. Some she doesn't. I asked the head of year to check the class lists for those she doesn't. I suspect the ones she is silent in are the ones in which her friend isn't with her. She has 2 friends from primary and she's braver if she isn't totally alone. A lot of this confidence also comes from primary. They were brilliant at supporting her to do this.

She doesn't sit alone at lunch and joins in conversations at lunch. I also know this. She sits with the 2 people she knows from primary and her cousin and her friend. There are 5 of them max. She can't cope if someone else joins them. I also know she only sits for a short time then she runs to the library to escape because peopling has gotten too much.

They have picked up on her sensitivity as well which is good but I'm concerned that because she's masking at school they won't see what we see and we will get bounced back.