SEN PARENTS SUPPORT GROUP - Thread 1

[mumofoneAloneandwell]

Hey everyone

this is the original thread that was started for half term:
https://www.mumsnet.com/talk/_chat/5491563-half-term-sen-parents-support-group?page=1

but we’re carrying it on since it’s been helpful

all parents of sen kids are welcome - also those who’s sen kids are now adults!

safe space to vent, share advice, tips and tricks, share good news and bad, and just chit chat and be 🙂

i am a mum of one dd. She’s 6 and is autistic and not yet verbal. It’s just us, no support system so I am thankful for the people on here keeping me company through the journey ❤️

Im with you on the grieving and other people, even loving family, not understanding.

@Echobelly im supporting my youngest DD14 through her first exams this year and revision is the hardest thing as it feels SO unstructured to her which with AuDHD is big a challenge. She’s recently started meds for ADHD and the impact is amazing on helping her focus but I still have to highly structure the revision. We’ve in a different place as effectively home educating with some funded tutoring from LA after a 3yr fight she couldn’t cope at secondary school. You’re more restricted in mainstream school but I would honestly look at college pathways your DS is interested in to see what he needs at 16. If he can get maths, English and one science gcse that can keep lots of options open, or there are functional skills options or foundation courses. So many ways to learn and different exam boards suit different kids ways of learning too especially for English. It may reduce the angst at home if he can hyper focus on 1-2 exams and “quietly drop” the others? Good luck I feel your pain the level of scaffolding at this age is different to the many younger ones on this chat (which is utterly exhausting especially if solo parent) but equally as hard as the gap with peers is challenging plus teenage hormones.

Had a lovely half term with my two SEN girls (both ASD and severe dyslexia, 8&12). Good combination of WFH and chilling and grandparents looking after them again, not too many arguments. It's school that triggers them.

DD1 starts a new school tomorrow as she had bullying at her old one. She's been out of school since Christmas. It's across town so I'm seeing if she can handle taking the bus to work up to her taking it solo. Otherwise it's two school runs and town gets totally gridlocked. She's due her second ever period on top of it all.

DD2 is so much happier in school holidays. We had up to 2 hours of "I want to die, where are the knives, school is too hard" on previous school mornings. I dread going back to it all while settling DD1 in.

Completely empathise with grieving the life you expected, we were all set for a high flying international life - DH’s job would have taken us to a new country every 2 years, the kids would have learnt lots of languages, and travelled in different areas over school holidays, I’d have seen the world….instead the biggest trip this half term was to the specialist SEN dentist and that took out the whole day with all the planning, social stories, reassurance, regulation activities etc. And it’s fine, we’re mostly happy and the kids are lovely, but it’s not what we planned for and of course we made choices with my career and our property purchase etc that would have made sense for that life but don’t really for this one!

How are we feeling about the imminent White Paper? I can't say I'm looking forward to it.

I don’t think all the leaks and speculation have helped at all. I don’t think the current ehcp system has ever worked properly (ds was one of the first in our area to get an ehcp) so something does need to change but it needs to be the right changes to support needs across the board not just save money.

Have you tried for funding from some charities like Cauldwell Children? We have a Delichon Delta and it's an amazing piece of kit, I haven't met a terrain it can't cope with. Ours was funded by a small local charity because although we have an NHS chair it doesn't cope with grass much less a footpath across the countryside.

Thank you everyone, we had an up and down night here with his O2 monitor alarming on and off but he's been happy and awake since 4 so hopefully today will be better and whatever was troubling him yesterday is gone.

@MightyGoldBear Could you look at those festival wagons instead? They may be more suitable as he gets bigger. You can get ones with sunshade roofs so he also has a safe place to retreat to if the world gets overwhelming. I’ve never seen one with a harness or seat belt and see you mentioned he’s a runner, but you may be able to attach his reins (if you use those) to the handle or something?

My DD is 18, doing Alevels via EOTAS but I also worry what the future holds, shes autistic pda profile situational mute high levels of anxiety. I cant see her holding down a job. She regularly needs days just to hibernate and sleep as shes burnt out /used all her spoons.
Shes isolated but routine and structure of ehcp tuition and memtoring is a life saver. However just been told my LA will no longer fund transport from september. I work full time and her timetable is different timinigs different locations and generally starts mid morning as shes not good first thing.
Anyway sending solidarity and good look to your DC with their internship.

It’s so hard to explain, my best friend asked if I’d considered getting my DD counselling… I tried to explain with PDA it’s a nervous system overwhelm. This half term we’ve gone no where…because she’s exhausted. We all are, especially me. I feel sad, DD is actually quite pragmatic and slowly working out her own boundaries which is amazing as she’s struggled with wanting to do things being unable then melting down. I think it’s partly as I’m understanding PDA better I’m offering her choices that reduce demand and early on. But it’s the mental load of it all.

we are in the EHCP process we have had a refusal to assess. So we have a paper hearing coming up.

Thanks, DS seemed on track for OK GCSEs until this year, it's like it's all gone downhill. He never makes linear progress, which is why it's so frustrating, but this is the first time things have gone really downwards. He should get a decent mark in science and drama and he seemed on track to do fine in maths (like probably a 5) until this year. It won't come to functional skills, but getting a 4+ in English Language will be hard because of his difficulty with extended writing. He also won't even be 16 when he completes GCSEs - it's a shame they can't be put off a year because I think one be gets down to 3 subjects he'll find it much easier. We're definitely going to deprioritise a few subjects where the grades matter less.

The Babyjoggers have a really high seat back, DH used to take my DC round on park run on it until the oldest was about 8 (and DC1 is tall). It has a really big hood if they need to hide from the world. We had the City Mini GT, I think they do have a version with bigger off road wheels.

Worried would be the short answer, even with a child on the 'mild' end! DC3 is medical needs / learning difficulties (probable dyslexia but he's too young for a diagnosis). He's on a SEN plan at school but it doesn't actually mean he gets much extra beyond being in the bottom group for everything and a little bit more time from the classroom TA. Things like speech therapist / dyslexia tutor we've had to pay for, we had to do all the 1:1 activities from them at home as school wouldn't. On one level that means we don't have much to loose, but on the other as the underlying point of the white paper seems to be about controlling costs it's hard not to worry that e.g. that little bit of classroom TA time might get pulled into other things and leave him without anything at all.

when Ds was younger we had a advance mobility freedom which was great when we were out running or off track. They are expensive (a charity provided ours) but you can often pick them up second hand.

Now we just use his wheelchair which is useless at anything but smooth surfaces but he doesn’t go out enough to warrant having more

Feeling physically sick about the White Paper tomorrow.

Hi all sorry just catching up, had a girls day and night yesterday with my sister and auntie (and ds) so had a late night. @mumofoneAloneandwell 4am he went to be on friday. I kept him up last night as we had a lie in and I needed sleep.

How is everyone? What's this white paper please?

Hi all, I’d like to join if I can. I have DS12, who’s diagnosed ASD and ADHD with PDA profile; DD8 has, I suspect, ADHD but no diagnosis and tbh we haven’t started seeking one yet. I’m also convinced DP has ASD and ADHD but he’ll never go for a diagnosis now. He didn’t deny it when I mentioned my suspicions though, just deflected.

We are lucky in many ways - both kids are bright and able to thrive academically at school. DS now has meds for his ADHD so is doing ok behaviourally (could always be better but compared with where we were before meds he’s an angel!) But he and DP clash ALL the time and it’s exhausting being in the middle of it. He’s also very challenging in his behaviour towards his sister and then lashes out when we pull him up on it - last night when he was stopped mocking her in a really nasty way he stomped off to his room the texted me calling me a ‘fucking asshole’. Which was nice.

DD is better behaved but equally exhausting. She gets distracted so easily - we send her to get dressed for school then go in and find her reading or playing which again causes huge rows with DP as he just can’t compute or tolerate it. She takes hours to do her homework as she can’t focus (apparently fine at school though) and needs constant entertainment unless she’s allowed on a screen, which unfortunately means she gets more screen time than she should just so I can get things done.

I too feel sad that we can’t be like families who can have days out or holidays without meltdowns or falling out. And I worry what the future holds, particularly for DS as his attitude towards being told what to leaves a lot to be desired and so how he’s going to hold down a job I do not know.

Nice to virtually meet you all and sorry to those who are dreading back to school; I hope it goes better than you fear.

@Iamnotaloggrip I can totally relate to the struggles of being able to do things, but not without the meltdowns. My DC is becoming reluctant to actually leave the house no matter how wonderful the place we are going.

Have you tried a timer watch for DD? So when she goes to get dressed and finds something way better, it can buzz after a few minutes which will maybe remind her she was already doing something?
I actually do this with myself to keep myself on track.

Re the timer - sort of. I sometimes race her, which gets her moving, and we’ve also tried a stopwatch which works for a bit but then the novelty wears off and she won’t play along for a few weeks. A timer we can set as a reminder is a good idea though, thanks.

@Iamnotaloggripdd sounds like D's in terms of distraction! I've bought some little chore chart things that you can write a task in then flip the switch from not done to done - would something like this help? I'm planning on a morning one that's basically:

Get up
Brush teeth
Pyjamas off
Clothes on (you could break down further if needed!)
Breakfast
Bag
Lunch box
Fidgets

To see if that helps with executive functioning skills, then have another for bedtime routine - I could link if you like? I haven't really started them just yet as routine is more flexible in half term!

We’ve tried all sorts to scaffold executive function over many years, (lists, timers, phone pings, …) and very little works apart from me standing at her door reminding…constantly. However new meds for adhd have been like a switch going off in her brain and suddenly she can get dressed and ready to leave the house in a few minutes. It’s honestly really interesting to witness the element of she’s “not choosing to not” do it her brain stops her doing it unless the right chemicals go kerching - she’s 14. I still can’t just say “pack your bag”, I have to individually list items..”have you put in a water bottle?”, she’ll sort that, then I’ll say “do you have your calculator”… and so on. It’s no wonder she couldn’t cope in MS school despite being put in top sets she just could not cope at all in the environment but because she’s academically able they just didn’t believe her difficulties.

I'm so glad to hear I'm not the only one who grieves. Had my lovely niece here to visit today with her little one (age 3), who is hilarious & adorable. DN is fantastic with DS3, but today he was grumpy, obsessing over things & not nice to be around. It's so upsetting.

He's now obsessing over something on his phone that's 'changed'. And despite gentle attention & super understanding from DP I can hear him escalating & see a meltdown coming, then tears, then sorry. I hate the ball of dread in my stomach.

I just want a peaceful life.

Sometimes I would like to drop kick Joe Public into hyperspace. As I carried little one back to his wheelchair after a stretch out on his mat while we were out today today some idiot charmer said "I suppose you should be glad he can't run away from you...!". No, just no. I'd be bloody ecstatic if he could sit unaided and if he were to ever stand independently? He needs to gain head and trunk control before we can even contemplate the former, the latter is a pipe dream.

@Seawolves I'm so sorry someone was this ignorant to you and your DS. Some people are just blind to social kindness these days.
Did anything positive happen in your day? What does your DS like?

It was a really positive day, yesterday was hard as something was upsetting him and I don't know what it was and I didn't really know what to do to help him other than lots of cuddles. Today he's been happy and cheeky, his favourite thing is to get up to mischief! He spends so much of his life strapped into equipment of one form or another that when he does get time out on the floor he likes to head for mischief. I love the fact that he's beginning to push boundaries, it's such a normal thing for kids to do but until recently he hasn't been able to show that side of his personality.