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 ❤️

😂😂Oh the joys! Oh no I can't imagine the horror of trying to clean vast amounts of cooking oil off him 🙈 he must have smelt like a chipper for a month 😂

Stank, it was all in his hair and everything.

We got his curtains back up yesterday…. and then he pulled them back down last night, so it looks like his bedroom just can’t have curtains anymore. Stick on black out blinds arriving today!

The enthusiasm we passed him to school with this morning after the weekend we’ve had, BYEEE child, have a good day 👋🏻

@SleeplessInWherever I hope the blinds help! In my experience they come down too 😞

Im really struggling after and incident last week (a couple of posters know as I've pm them) im a worrying mess. I see danger for ds everywhere and its giving me bad anxiety. My dh is getting annoyed with me about it and my sm said the docs will think I've got munchausens if I continue the way I am but I can't shift it at all. Ds puts everything in his mouth and there's so much i keep seeing on the floor outside that could be really bad its putting me off going to places! Any words of wisdom ladies?

Hey everyone

Monday - two weeks left of school for us before unenrollment.

@Helplessandheartbroke 🥺❤️ I am sorry, no words of wisdom but solidarity with you. Youre a good mum who loves her son and youre doing your best girl x

@mumofoneAloneandwell hey how you feeling about her finishing school? Have you been offered any support?

Thank you for your kind words 🙏

That's okay - I'm really good about it. I am counting down the school runs 😄😄😄

I left today at 7.30 - home at 9 45, 10.

Left at 1.15 - home at 3.45 almost 4

Insanity 😄😄

Hope youre all well - my flat smells like bacon as its all dd wants to eat 😄 - shes got it in her lunchbox for tomorrow as I couldn't be arsed making sausages (she had them for lunch today and refused them anyway)

Shes still up, refusing to drop off despite having had her bedtime routine done

😫

Dear God @mumofoneAloneandwell how are you coping with everything??

so DD is on melatonin but it doesn’t do anything for bedtime ? 🤦🏻‍♀️🫩

Oh no 🙈 stick on blackout blinds are a fantastic idea, didn't even know they were a thing!
😂😂Yup, some days it's just needed to get them out the door away for a few hours! Excitedly watching the time until 9am 😂 but then some sort of mam hormones kick in after a few hours and u really miss them. And then they do something within the 1st 5 mins of being picked up that reminds u 😂
Hope you got a bit of a break while they were at school. It's St Patrick's Day tomorrow so a bank holiday for us, no school 😭 kinda dreading the Easter hols too!!

Not sure I have any words of wisdom, but I get ya. My DD is the same, thankfully and hopefully she continues this way but she never ingested things really, just put in her mouth although she did try to shove a whole monkey noodle back her throat today so had to throw them out. Have had to throw a lot out over the few years, can't have any small pieces of toys or foam balls. However, well meaning (but clueless) family keep buying toys with small parts 🙄
What age is your DC? My nervous system was (and is, just maybe slightly more relaxed) on overdrive - I walk into a room even without my DD and immediately spot things she'd put in her mouth. I've the urge to move them even if it's a place she'll never be in! Chewies have helped a bit. Hasn't eradicated it whatsoever but I make sure to have one wherever we are. Have you tried them?

Hey, thanks for replying. If you'd seen what id encountered last week you wouldn't believe me! Luckily ds didnt get to it before we found and binned it but it rocked me. Tried chews and he used to help his regulate but then he'd get quite angry with them so we stopped them. May need to try again. Noone else gets it do they? I hate going to other people's houses. He once had an incent stick in his mouth at my friends and drank laundry detergent at my SILs! (That one was a wasted a&e trip)

I'm so glad it ended ok and you got to it in time. It must have shook you and put you on high alert ❤️
No, they just don't get it and it can be so hard to call to others' houses. My DD will somehow find even the smallest thing even if the place has generally been tidied up to have small items removed - she somehow found a battery in my brother's house recently, he has no idea where it came from, they had tried to clear the areas before we called but I guess if you never had that numbing fear of your child putting something dangerous in their mouth u just don't get it or have the eagle eye for what might be unsafe! She tried to eat a candle in my friends house 🙄thankfully no laundry detergent, really glad that worked out ok for ye! I think I would have fainted with worry!

@Dunnowhatimat exactly i mean i'd never leave the lid off laundry detergent and its locked away under my sink but sil never had to think of this.

Batteries scare the crap out of me too, especially those button ones! And magnets!

Just to be clear the item found last week was not in my home and was not ours.....

Its all just made me a nervous wreck!

Really sorry to hear you’re struggling.

Thankfully we’ve come through the “everything in the mouth” stage but it was horrendous. Twigs, batteries, mud, he gave himself an infection once licking a metal gate. Honestly, lots of “out the mouth!” and direction to sensory chews and eventually (very eventually) he grew out of it.

He is very unaware of risk, and will just run into roads and jump into water etc, which is obviously stressful. He sometimes actively seeks risk (like climbing!), he likes the thrill of our reaction to it.

The last few years we’ve tried really hard to help him learn to manage risk and make more sensible choices. Letting him walk to the car, without holding hands but with supervision for example. He’ll do really well for months, and then dart into traffic and the whole thing starts again.

@SleeplessInWherever how old was your ds when he grew out of it please?

Yep I hear you on the others. Ds .aye stand at the front door watching me take the bin out and then on the 11th time leg it up the drive towards the road.... hes also a climber. It puts the fear of god into you doesn't it?

I often feeling im failing him but then I dont think anyone else could do better too, does that make sense?

We're up and im praying we get back to sleep at some point 😴

@Helplessandheartbroke

He’ll have been around 7, but in his case it wasn’t PICA - it was sensory exploration. His sensory needs became more physical - he swapped eating everything for deep pressure, etc.

He was also cognitively younger at the time, so now he’s roughly 3y/o developmentally we see less of that kind of stuff and more of others, kinda in line with where he would be at that age.

You’re not failing him, you’re doing the very best you can and sometimes that’s all we’ve got. Nobody has all the answers - most of the time I don’t even understand the question, nevermind have the answer.

The way I look at it is we’ve gotten through so far, and will continue to. We’re all only human, and that’s the best you can do sometimes.

So sorry x there's only so much we can do and I know how easy it is to give this advice and not take it myself but do try to take it easy on yourself and look after yourself too x

@SleeplessInWherever @Dunnowhatimat thank you both. You've been very kind, as everyone else has too. Hope youre all well this eve?

We never got back to sleep last night. Ds has fallen asleep with no tea or bath but hes also got a bad cough so im letting him sleep x

This explains your anxiety girl, those are severe things to happen - i hope youre practicing being kind to yourself. Raising an autistic child is anxiety inducing, especially ones who have zero awareness of danger ❤️

Dd napped in the car so its a late one for us - mafs, handcuffed and then I may watch ER to take us into the night

Dd has finished dinner and is eating cupcake icing out of the pot 🙃

Luckily no school tomorrow, which leaves 7 school days left 😫😫😫 cannot WAIT

Bless ds, I hope he feels better 🥺 - will you be able to get some sleep while he does? ❤️

My dd is the same with running

She has zero awareness of danger!!!!

I have flashbacks to the time we bought donuts. I parked outside the main door to our flat, took her to the door, went back to the car for the donuts. She was so excited she ran past me into the main road!

I'd not long moved here and was screaming like a banshee! I think my neighbours must still judge me 😅

The other thing is water. I am very confident that if I dont keep a hold of her when we're in Central London, she would not hesitate to jump into the Thames for a swim 🥺🥺. Terrifying

The same experience with trying to build up trust - she likes to run up and down the aisles in aldi. As its near home and I know it, I let her. But then she forgets herself and does something dangerous and its just like... i can't let her out of my sight!

Ye I didnt go a&e with the incent stick and it was one of those you put in liquid too! Just monitored him but with the laundry detergent I took him as I know that can be really bad but they didnt do anything, we were home within the hour! Scary. Id be in a&e every other day though if I took him every time x

See this could either mean shes had a danger nap or shes that exhausted she will sleep again.... hopefully the latter.

Im going to try and sleep soon, hes in bed now managed pj bottoms but not top as he fell asleep downstairs. Hes not had tea or a bath! I've brought snacks up if he wakes.

How come you've no school tomorrow?

That main road incident sounds scary! Not suprised you screamed! X

Shes taken off her clothes and is banging a bowl with a spoon, whilst running around the living room 😅😅😅 - just trying to watch mafs!

I wonder if I could ask a question? My dd is about to start at a unit in secondary this September. One of the mums from our current school has a older child at the unit. I reached out to her to ask about the move.

Was this rude? It was literally as long as this posts first paragraph.