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 ❤️

He’s not a fan of school generally so he’s never happy going to school but first day back is always worst. I think it’s getting back into the routine. School does offer a lot of support luckily.

How’s your dd with school?

@TiredYetExhausted im with you! Im lucky I can wfh however I can't do it much with ds so I have to travel 35 miles and wfh at my mums so she can help. Its a nightmare isn't it.

Absolutely. The logistics of it all are so complicated! I also WFH during term time but its just not an option when he's home. I can't turn my back on him for a second. He once filled the toaster with little plastic toys and then turned it on 🫠 came running in to a kitchen full of smoke.

Has anyone with older kids found a good way to help a kid with inattentive ADHD do homework and revise?

I feel totally stuck between struggling DS and impatient/lacking understanding DH about this. Neither of us has time or energy to supervise DS constantly, we've tried him only using his laptop in the lounge to try and prevent him frittering away time on YouTube or whatever, but that doesn't seem to help. He won't ask for help and we've told him to use Google or Bitesize if he's stuck but he won't remember that. He'll stare at a blank screen for hours rather than find the ability to start written work - and I totally understand this is hard for him, but I don't know how to help and he has GCSEs in less than 18 months.

I honestly think that if he can get past GCSEs and onto a few subjects he's really interested in, he'll do well, but he has to get past them. I still suspect he'll do quite well in 2 or 3 at least, but he might not have a straight route to post-16 qualifications. Unfortunately telling DH that he'll have to lower his expectations isn't an option.

@TiredYetExhausted oh no! Its scary. Ds is think has pica so I can't take my eyes off him either mainly for that reason

It's so hard for people to understand, even though they think they do understand. It's not until you live it that the isolation is very real and very challenging. I am mum to a nearly 18 year old disabled (wheelchair user) non verbal girl with sensory issues. She does not have autism but is an adult baby in most respects. From my experience so far, there is no easy answer to all that comes with a SEN child. I do my best to immerse myself into my daughter's world and only 2 years ago did I connect naturally with another SEN mum and we can rant and chat freely when it all gets a bit much as well as bounce off ideas,etc.

As for any advice that I could give, I would insist that wherever and whenever you can, look after yourself. Seems a bit of a basic thing, but call it self care, time out, sleep, scrolling, reading - (even though everyone deserves this, we don't get the opportunity as much as many parents and it should be the norm, rather than a treat) - as we are no good to our children if we aren't feeling strong enough both physically and mentally. Also, I spent hours on parent groups on social media platforms both for advice and reassurance and some solid websites that offer support and guidance - one being contact.org.uk

Local council should provide resources for SEN children that are inclusive, so also worth checking and gives a chance to network with others in the same boat.

We use revision sessions in school mainly as he hates working at home!

for us there have been burn out issues in the past so I have taken the route of not pushing too much and working on he will do what he does!

It is somehow comforting to read this thread and I'm so glad it's visible.
It does make me feel I've got it easy although I am tearing my hair out at the moment in between sneezing and trying to stay awake.

DS's phase transfer planning hit a new low today. It is an utter mess and I doubt it will be in any way sorted out by September.

We’ve literally done nothing this half term - would love to do some day trips but the pressure of school exhausts us all and we needed this time off. DH is SEN (undiagnosed) and I wish he’d taken time off too. Cos he’s really stressed. I’m on edge a lot at the moment.

After chasing since we had annual review in October (knowing there would be delays!) I finally got a response from the LA about updating ds plan for post 16. They have told me I will have the draft a week - don’t know why but I have no faith that will happen!

college we want is waiting for the plan so they can confirm if they can meet needs. There is no back up option locally so we are stuck if they can’t!

Adhd kid here towards GCSE

unmedicated this half term has been hell for revising ! Not as hard as other parents on this thread so not complaining

in case it helps get quizlet for studying it’s fantastic as it’s digital flash cards great for these kids …. BBC etc nowhere near as good

also recommending quizlet in general for all parents here as it’s fun way of learning rather than boring books/BBC/seneca

also came here to send hugs to my lovely strong Op @mumofoneAloneandwell ❤️

Thanks, I'd forgotten about Quizlet - my oldest, who did very well at GCSEs, used it a lot and I keep forgetting to ask them to teach him how to use Quizlets.

@Sirzy - wish I could get DH to understand about not pushing too hard. But it's difficult to strike a balance I don't have the energy to check in with DS and check he is on track as it needs to be pretty constant or else he doesn't get anything done.

Hello, hope it’s ok to join you. I’m a mum to DS (7) who is diagnosed autistic with PDA profile, probable ADHD and ARFID. He has full time 1-2-1 at school. I am also diagnosed ADHD with autistic traits. We also have DD (5) who I suspect may have high masking autism.

I feel very guilty as I have worked all half term and DH (who is self employed and quieter over winter) has been juggling the kids all week. Work has been really heavy this week and I have struggled a lot with feeling completely socially burnt out by the time I get home so haven’t been the best version of myself.

Hello! Two kids with SEN here. Soooo tired of all the nonsense with schools and the LA. Thanks for the thread.

I have a 21yo with an EHCP that will probably end this year. I tend to be in no mans land, with DD not fitting with peer age group but (apologies for wording) not being 'needy' enough for SN groups.
She's doing a Supported Internship and could work part time with the right job, but finding that right job that she can get to May be hard.
I don't know any other parents of similar offspring.

This child will not sleep 😴

So hard 😢

@mumofoneAloneandwell you asked “** how tough 🥺 - I wonder whether he is struggling with understanding subtle social dynamics and friend groups, but is unable to verbalise it? How is he with making friends?”

And yes absolutely - school says he’s always chatting to people, but when pressed they admit they mean he sort of floats around the playground saying things to different groups, not actually settling and playing with any of them. He says he’s bored and lonely and nobody wants to play with him.

He does have a few friends but plays with them one on one, so of course a lot of the time those friends want to be playing with bigger groups and he doesn’t seem able to join in with those so ends up alone.

He asks every day to be homeschooled instead but I think that would be even worse for him learning social skills tbh.

@Helplessandheartbrokesending strength. Mine had an absolutely shit night, awake til nearly midnight then up and awake for the day at 3am 🙃 I don't know what was wrong last night, he is verbal but its limited and he can't express himself or tell us what's wrong. He was distressed but also angry. Banging on the walls, shouting things like 'I'm like a bird!' Melatonin did absolutely nothing. He eventually went back to sleep at 5. I feel like crap today.

@TiredYetExhausted my 9 year old is verbal but also limited at times and a gestalt language processor. One thing the SALT advised was to really try to get inside whatever he says, so in the case of “I’m like a bird”, how would it feel if you were a bird? You’d be high up, in the sky, with nothing beneath you….i think in that scenario I’d feel dizzy? So maybe that’s what your son was saying, that he felt dizzy?

That’s how I’d interpret it from my son, he once screamed at me for ages that there were “snakes in his head” and it turned out he had a strand of hair that had tangled up and it felt thick like a snake to him, now when he’s saying things that don’t make sense I try to interpret them from that perspective.

You have probably already tried everything but just thought I’d mention!

@SoManyFidgetToysyes he is definitely a Gestalt learner! He has so many phrases for different situations, and I've figured out 90% of them, but this was a new one. Like he'll say 'my stomach feels brown' if he has a tummy ache. He was definitely in no mood to communicate last night though, very angry indeed. Let's hope for a better day

@mumofoneAloneandwell I get why the SN section might feel like Siberia these days, MN has got so big in topics and members that it can be hard to locate. Maybe stay in Chat and see how it goes. Mind you, there are examples of general chat threads in specific topic areas, e.g. We Took You to Stately Homes in Elderly Parents and the Bluestocking Cafe in FWR. That might work for your SN chat thread

This just reminds me of my 5 year old. He tells me “I’m just green on the inside” when he’s angry over and over. SALT have said he is a gestalt learner. His speech is great in that he has a wide vocabulary but most of what he says makes little to no sense. He is obsessed with birds at the minute so it’s a constant stream of “penguins like it cold” “chickens live on a farm” The other day he claimed he was a woodpecker and bashed his head off the wall 😳 he only did it the once thankfully 🙈

Hi everyone. Single mum of one young teen ASD diagnosed, ADHD likely. He slips through the cracks, I'm sure you all know what I mean. I'm feeling hurt by the ablist statements that have been made about him by the school pastoral team. And now his body is screaming 'pain!' and there's nothing I can do to make it go away. Monday feels like a pending death sentence. Can't think of a less dramatic comparison 😪