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 ❤️

Haha, oh - yeah we both have been previously. Neither are currently but that might change 😂

ADHD meds, didn’t work for him whatsoever. They do improve his behaviour but that’s because he won’t engage with anyone when he’s on them!

We have days where all he’ll eat are yogurts. Not ideal, but as long as he doesn’t go to bed empty then fine.

We’ve got PA hours, but we can’t use them because he’s 2:1 and they can’t find 2 people able to meet his needs. He won’t tolerate one of us with that person, it’s either both of us or neither!

Honestly, I don’t know how you cosleep. We have in the past but I genuinely need that brief break, even if it is while he’s asleep. Our bed is a firm no now, it means we sometimes get less
sleep because he does sleep better with company, but I don’t think I could cope with days like today and then him kicking me in the ribs in his sleep, I’d lose the plot!

Was he on stimulants?

perhaps consider non stimulants (Atomoxetine) .. all these melt downs will stop 😉

Oh i remember, have you had no luck chasing them up and insisting they provide help - chasing the disability social workers themselves?

Honestly, I really tried to get her to sleep in her own bed a couple of years ago - it would take a minimum of 2 hours for her to drop off!! I'd put on the radio on low and read scroll twitter

One time, i did my 2 hours and when I got up to go to bed, she shuffled past me to my bed! And that was the end of that 😄

Shes going down now, at 1.15 😩😩

She had a bowl of rice and curry - okay I feel better about the food then, if your ds is okay with yogurt. Maybe she's just not as hungry some days? 😬

Youre doing well honestly - we all have bad days and sometimes I think these kids are still kids! Winding their parents up is part of the territory xx

Afternoon all

Dd went down at gone 2am 😫😫

Today we are needing to get out and about, even just to the shops. Ive got some big cardboard boxes that I want to make use of as well, maybe make a fort 🤔

Hopefully your monday mornings have gone well 🥰 - @SleeplessInWherever hope youre feeling lighter today x

Oh dear God how do you do that !

honestly I’d ask for Melatonin review if this is not working! xxx

Hugs to all people having a challenging time.

DS had educational psychologist assessment this morning, she will call me to arrange a time for feedback, very interested to see what comes out of it. It could turn out to be all ADHD, but possibilities that have been raised by CAMHS and SENCOs are autism, dyspraxia and maybe some sort of language processing issue. In a way the latter might be the thing I'd follow up most urgently if it came up as it might explain his slightly puzzling difficulties with writing and describing things even though he's quite articulate.

Shes got 2mg melatonin but honestly she sleeps for hours usually - its just the routine has fallen to pieces!

I was so disoriented today, just a mess. We're waiting for her to eat now.

I've set my alarm for 9am - hopefully the 6 hours we get will carry us through til tomorrow night

Thats good news re the educational psychologist - yeah, I think just having an explanation will present a clear way forward imo

How have you both been coping with the exams, not long now i imagine? x

Thanks - he's only got two left and not until end of next week.

@Echobelly I hated the gaps between exams I remember - I just wanted to get them over with 😄

Starting our day now at midday 😫!

I was quite relieved he has some time - he's quite focused on those two subjects so hope he can put in some good work in next 10 days or so.

Its 00 40 and i am praising my dd on having eaten her pot noodle 😔😔

An hour until she will be sleepy 😴

Yeah thats true

1.35am

Dd is happily singing to herself whilst kicking the duvet off of us