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

I hope tonight is better @mumofoneAloneandwell

So we had feedback from educational psychologist today about DS. She doesn't suggest any additional diagnoses but has been able to zero in on some specific difficulties from the ADHD. He was average in about half of areas, above in one or two, but, unsurprisingly, working memory and auditory processing are problem areas - he will remember much more from seeing and experiencing than hearing, and getting ideas from head to page is therefore obviously difficult. She definitely encouraged trying text-to-speech software for him.

We touched on autism and was in agreement with us that fairly likely he is on autism spectrum (just as we think is case with DH who has has ADHD diagnosis) but probably not much to gain from a diagnosis, so maybe just bear in mind for learning techniques.

We went down at about 3am last night iirc - we managed to get up at 10ish

We've been out and about today. Dd is looking tired so I shall be giving her some sugar to keep her awake!

@Echobelly surely a diagnosis would be useful in the future though? Do you feel better for having seen her otherwise?

We use proloquo2go - bloody expensive, only available on Apple, but worth its weight in gold x

Up at 8am today!! Hopefully back to normal here

ITA with @mumofoneAloneandwell that a diagnosis of autism can be of more use in adult life. DD2 is diagnosed with ADHD and is probably autistic. She could have had an NHS assessment for autism, but turned it down.

She has been bullied by her colleagues, and especially her manager in her last two workplaces. IMO, it’s the autism and difficulties with social skills, including the lack of understanding what small talk is for, that have made work place bullying more likely; whereas she could and did take methylphenidate for the ADHD to improve attention.

She could and should have asked for reasonable adjustments, in respect of the autism!

My love to your dd2 @BlueandWhitePorcelain ❤️

I have my autism diagnosis, got it a few years ago, and I am so grateful for it. It just explains things and makes me understand that - i am not always going to understand whats going on around me

I had a horrendous time working. Absolutely horrendous. Now i'm at home with dd, having a better understanding of myself helps me with her

Definitely challenge them @Echobelly for a diagnosis if you can

Me and dd are alright here, just plodding on. We should see her school soon, before they break up. She has been asking for 'school' so shes very much over being homeschooled by me 😄😄

If anyone has any ideas on what I can do to meet other homeschooling parents, please let me know? She wants to play with other kids 🥺 xx

Hi everyone, its mumofone here ❤️

After a campaign of harassment against me (and my gifs) i deleted my account

Was probably a bit dramatic of me but I got really upset 😩. MNHQ didnt bother taking action against the thread attacking me for a day, but deleted my comment back within seconds. Plus they didnt reach out to me to check i'm okay.

Thats where ive gone. I'm taking a break from it all as I was a bit addicted to mn. Ive been reading classic literature to improve myself 😩😩

I cant even catch up on the thread because its an infinite scroll thing - i hope youre all okay?

I was chatting with @Echobelly and @BrentfordForever most recently, I do hope youre all keeping well, and that ds is ready for his last exam?

Love to you all, I'll be back after a break, as i am a mumsnet addict tbh!

Would love for you all to keep the thread going if possible?

Will be around til this evening and then will give it a break ❤️❤️

Sorry to hear about the harassment, really don't people have something productive to do with their lives?

DS is feeling ready for tomorrow's exam - he seemed to be doing quite a lot of work at the weekend. I don't know about rest of this week because, bless him, he's been giving a lot of support to his best friend who is autistic and has been having a mental health wobble this week. I am so proud of him for being such a good mate.

OMG what ???

please no!!!!!!

don’t let any crapheads here change who you are or upset you !!!!!! Come on, you’re stronger than that!!! Haven’t you ever worked with d^ads? Same here ! Just ignore !

i ll DM you noway I am accepting you being upset or disappearing ! x

Hi all, I’m new to this thread and wondered if anyone had a child who was similar. I’ve tried local groups but their children are slightly different:

13, non speaking, autistic, adhd, learning disability, epileptic with emotional behavioural issues. Goes to a complex needs school. Aside from that won’t leave the house except for short drives to McDonald’s or a half an hour walk around the park (which has gotten harder as she’s unpredictable and recently kicked a member of the public). Has no special interests, doesn’t enjoy being with other people. Thankfully her sleep is okay. We’ve been offered respite for 3 nights a month but I’m really struggling with her. She gets stuck in fixation loops, hits her siblings who are both older, spits in my face constantly but all of us are finding her behaviour relentless. She controls behaviour of others like the tv box has to go in its place, we can’t cross our arms etc. She’s medicated for adhd so the behaviour lessens a little but once the meds wear off she’s manic, hyperactive. I’m just at a loss with how to manage. Life feels exhausting. We’ve had the behaviour team whose only suggestion was a pack of visuals to stop her hitting but she ignores visuals. She has her iPad to regulate and a communication programme on it.

We all feel exhausted by her. My kids have to lock their rooms as she goes in and destroys things, she slams doors frequently. We just don’t know what to do now.