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 ❤️

No i had it last time I got like this. It helped but I had cbt too x

oh god I literally had to leave that one too and do some breathing exercises. S&B was hitherto my oasis of calm chat about clutch bags for wedding guests.

This op asked a perfectly sane question about holiday knitwear and got called "contrived" by a pp for the audacity of wanting to wear a cardigan in France! Honestly don't know why MN can be such a bun fight at times!

...The less said about the SEND/home school thread the better, I am running out of pillows to scream into. I try to remind myself that very opinionated, uninformed people are fortunate that their lives have yet to force them to make hard decisions in difficult circumstances - and that my lived experience won't change their very prejudiced views, sadly.

What a surprise last Friday I was promised DS updated ehcp draft would be with me in a week. Guess what - it wasn’t.

Why does everything have to be a battle?

Id remind them of the legal deadline

How are we all doing?

I've officially decided, dd will soon be homeschooled due the commute 🥳 - just a couple of weeks to go

Ive also tried to sort a disability social worker, will keep you updated on the process

Tough times here as dd has fallen asleep at 6pm! Will need to wake her in an hour, or she will wake up at 1am, ready to play!

wow <3 aww hugs op, same.

I dipped my toe in the waters of the home ed board, and there were a lot of pp's dead against it, not sure how they had strayed over there but hey ho, so I ducked back out of that board without so much as a lurk.

I am having housing issues rn which is super fun on top of just daily life. The Universe was like, oh here, you look bored- ta da! have housing instability as this week's Mystery Curve Ball.

Did you have a couple of mins to have a cup of tea alone before waking DD?

DC 1 has been on a hyper/up phase today, I think it's almost as much work as dysegulation meltdown 😅 I can't keep up 😴7pm, so I have 3 more hours to go before I might get a rest

Will have to check out that board - why anti home school people would be on such a board, I don't know 👀

Oh bless dc, dd is just waking up now so it'll be a late one here, fingers crossed for a quick bedtime for you

What's happening with your housing? 🥺💐

@mumofoneAloneandwell youre so brave! Especially given you've got no support, I really hope it works out for you.

@Tiramisuforone I hope youre ok

short version is that Dad of the Year (aka The Ex) got to stay put, and we didn't. I know I could have dragged us all through the merry hell of getting what's potentially mine/my kids, but honestly, trust me I know who I am dealing with and this was the better only option. But that being said it's not easy, it's just more doable, let him feel he's won that round, he will put "his" money above the SEN DC, above me, anything. Life is too short. (that's what I tell myself lying awake at 4am anyway!!)

tried to destress again over on s&b, it's carnage over there rn, Idk what has happened to the peaceful boards. I want to start a bland thread about something neutral like ankle socks or pyjamas just to balance it out!

good luck with the home ed plans op 💪 it has been a massive relief to us so far, je ne regrette rien!

Does anyone else's child self injure during dysregulation? DS (7) has again got a bruised bite mark on his forearm - he can't remember when he did it but he did have a bit of an outburst at school today (we are week 2 into medikinet, going to keep an eye and discuss increasing if continues - they did say we could if not having desired effect but I also don't want to dose him up more than necessary so am willing to give it a bit longer). It's not a new thing, he has done this semi regularly at home and at school and sometimes will scratch himself too which draws blood. I understand the brain reasons behind it but it's still so upsetting to see. We've tried chews etc but I think he's really wanting that sensory input/hormone release that comes with a sharp pain...

I'm also a bit annoyed as he told me he doesn't have his agreed movement breaks any more - school are generally very good and supportive but I've explained and explained to his teacher it needs to be a set thing regardless of whether he "looks like he needs it". Bah.

Mine did when younger, it's got a little better recently

@allthenamesitriedweretaken

Ours used to headbang in crisis - he bust my lip a few years ago while I was trying to stop him.

He has thankfully stopped that now, he does still slap and scratch himself. He’s slowly learning to give an adult his hands when he’s becoming disregulated, but that’s a long work in progress.

Ds used to bite the back of his hand. He now pulls my hair instead.

Hi everyone, I just wanted to say hi as its been a few days.

I managed about 30 seconds of self care today to thread my eyebrow (note the singular! It gets a bit Bert from Seasame Street if I don't keep on top of it, which I haven't been, I now have two eyebrows again like a normal human person)

I was only interrupted a million times - boundaries are kind of hit n miss in a PDA profile, it might trigger a tsunami meltdown if I try to enforce anything, it can and will backfire, so it's better that I just lower my expectations of "me time" or self care.

sending tired hugs out into the ether and hoping everyone is managing and having a nice weekend x

DD had a complete screaming meltdown last night (overstimulated after a week at school and a friend over). Swearing, calling us all sorts, running off into the street. I was evil incarnate for turning the WiFi off at 10pm.

She's 13, AuDHD, manages ok at a mainstream school.

On the plus side, she didn't hit either of us, break any glass or threaten to stab herself, so I guess that's progress 😬.

This morning she said "I didn't like the things you said last night. I hate you. I don't forgive you."

We said we love you and we didn't like the things you said either.

Ha! That eyebrow comment .. I’m trying to work out the heritage as I might have similar
😂

dh stuck in another country (due to what’s been happening ) so I got zero minutes to myself last week and a half (apart from working , serving a crappy dickhead boss)

Sending hugs!

cannot believe your patience , pls share tips on how you keep your cool 😯

Hey everyone - poorly here but managing

Oh no @BrentfordForever how is he coping? You must be stressed on top of everything else - how are you and dc coping as well

@Tiramisuforone 😄 I love that - i have mismatching eyebrows too, but they've both been waxed into thin strips this month as I got too excited with the wax strips

Oh @Needlenardlenoo you sound like you handled that well! How is she today? It's tough at that age but with audhd on top, not easy at all ❤️

@mumofoneAloneandwell he’s effing holidaying the bastard

I am totally screwed here , so exhausted it’s beyond and hardly coping between an ADHD kid, another moany one and a demanding shithead boss… I keep on opening that Adhd meds drawer and wondering what would it feel like 🥴🤦🏻‍♀️

aw sorry you're poorly op xx

my DC1 has a PDA profile does your DC? Our pushback meltdown situation can look pretty similar

you sound like you handled it so well.

I still really take it to heart when mine says stuff like that 😥

@BrentfordForever I'm sure I don't. She can be very rude and aggressive and it can be really hard not to respond in kind. I learnt from Mumsnet to keep responding to I hate you with I love you. It can help to be slightly distracted. So last night I continued watching the film with part of my attention (till she switched it off). We have a family code word to signal when verbal abuse or questions get too personal (idea from a therapist) and I regularly make PowerPoints amd photo displays of her being happy doing nice things (idea from Jeffrrey Bernstein's book 10 Days to a Less Defiant Child).

When she was younger putting a locked door between you and her was the only way to break the cycle. I got pretty good at grabbing my coffee and phone and locking myself in the loo!

Disregulation and verbal facility is a really bad combo!!

Also I teach in a secondary school so it's not like I don't experience any other behaviour like this, although at least I can send them to detention 😂.

She attends my school where she is about 95% good/5% frightful, which us pretty decent for PDA autism I think. And no I haven't ever had to send her to detention myself....

Wow @Needlenardlenoo you’re so resourceful! I don’t think I’d have the energy tbh!

i ll get that book btw (read so many !!), did it help you to have control over your emotions resulting in a more contained DD?