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 ❤️

Have you mentioned what ds's disability is @Seawolves - apologies as ive missed it

Is he your only? ❤️

Dd is almost 7 and autistic and is currently challenging my authority! and winning

We managed to get out today, one big trip to the dump, and then to sainsburys and aldi

We were meant to go swimming but I overslept 🙃. Now shes refusing to sleep and is just rolling around in bed next to me 😄😄. Its gonna be a late one but i'm not arsed

Tomorrow - I want to finish cleaning her playroom (it's actually her bedroom, we're not posh, she just sleeps with me)

I think youre doing amazingly girl - and we're definitely a good bunch here to support each other x

This mum may just be busy @SurreySenMum26 xx

I need to respond to another mum actually - she kindly sent me a list of local babysitters as I would like a night out a month

Or she may be a dick 🤷

How long ago did you message her?

Bless ds, sounds like the two of you could use some warmer weather and just a chilled holiday

Oh gosh how are you coping?! And working from home on top of it all xx

😄 I had to hold in my laughter - shes proper cheeky!

My parenting journey is very much - well i'm cross at you for doing that, but youve learned a new word so i'm also happy 😫

Hope our @BrentfordForever is doing okay with the new job!

And @Dunnowhatimat and all of our other regular posters and those who pop by are doing well ❤️❤️❤️

OMG @mumofoneAloneandwell day 1 of school holiday === day from hell … youngest sick, and new boss turned out psycho 🥴 … he thinks he’s a hottie too, if he pushes too much I might have to be honest with him .. he’s nowhere near the “hottie” zone .. not even “lukewarm” 🤣🤣🤣

thank God for my adhd meds, I am going through crap very robotically 🫣🫣

how are you lovely ? Sorry haven’t read all messages, it’s like I’m on the twilight zone 😳😳😳

Three days into holidays and not really been able to get DS into revising for his 'One Year to Go' to GCSE exams. He has a physics test much earlier than the other ones (which is his weakest science), but he should also use the holiday time to work a bit on the other ones that are before half term.

It's difficult because he does want to do better, I think he does want to revise... but it's really hard to get him to do it unless you hover over him constantly, and maybe not even then. There seem to be times he gets 'in the zone' , like at Christmas last year and the year before he seemed to get himself in gear and do a decent amount of revision for his January tests, but I can feel he's just not 'there' at the moment. He isn't able to say what it is that has made him self motivated, he just says he doesn't know why he was able to get started those times. We tried seeing what would happen if we just pulled back and left him to it before his autumn tests to see if we were just pressurising him too much but he just didn't revise and did poorly.

And he needs to get used to doing it all the time from now on, as basically next year is non-stop mocks until the real thing, and he'll probably have to revise over summer, especially as they have to retake any exams in September that they are very behind on in the year-to-gos, and at this rate that will be most of his subject.

I'm nervous to pull in DH to this because he's unable to manage his anxiety about DS possibly doing badly, and he often does more harm than good. Also DH is now working in the office 4 days a week, whereas I'm generally home 4 days a week, so I feel really responsible but it is so draining trying to get him to do it because it's always 'I'm about to start, I'm about to start...'

What an amazing mum you are @Seawolves ❤️

one day we ll enter a different place where there is no judgement (I am Christian )… we just have to wait for that ❤️

@Echobelly is he on meds while on holiday?

He isn't normally, but I wanted to suggest it. But we're out of meds and, while I ordered new ones start of last week, got a note at the weekend saying it's delayed because, yet again, the bloody GP has not responded to the prescription delivery request yet. 😑

I should see if I can manage the titanic task of actually speaking to the GP tomorrow.

Evening! 👋🏻

Day one of the holidays was DS’s GP appt. He lasted around 2mins and left the room, bolted out the door. So my partner took him to the car while I stayed with the doctor.

Next step apparently involves getting bloods done, though how we get a child who currently won’t go into a hospital or doctors surgery to sit while someone puts a sharp object in his arm is absolutely fucking beyond me.

GP has prescribed numbing cream, which is great… except we can’t get him in, and we definitely can’t hold him still for long enough for them to draw blood.

Going to speak to his paediatrician and see if she’s got any bright ideas.

PALS complaint went in about Friday, had acknowledgment already, they’ve launched an investigation.

Can you bring people to physically hold him down?

Sorry forgot to ask how it went xx

If you call him tomorrow they can send prescription asap (adhd drugs need physical prescription only but if you pick up yourself you can have meds next day )… id press on like there is no tomorrow …

its tricky for you poor DS to focus without them isn’t it ? Bit tricky to expect him to do work bless him without lovely meds .. I’d just be on the GP’s case xx

@SleeplessInWherever they can use sedation if you explain the anxiety level.. GP cannot do it, but they ll ask a consultant

Absolutely no need to apologise!

He’s too big, sadly. He is 9, but he’s also 9 stone. When he’s escalated that child is strong, he might as well be 99 stone.

Me and his dad tried together on Friday and unfortunately when he’s in crisis, he’s too strong for us now.

@BrentfordForever

Thank you, that’s exactly what we’re hoping for! Which is mad really, but if the other option is restraining him to a bed, I’m not sure my nerves could take that!

@BrentfordForever

My dd was sedated for mri scans

Just to say that they will put the dose into his nose iirc - he will need to be held down but only for less than 5 seconds as its much easier than an injection xx

Thanks, I would have been on it today but knocked out by an awful cold and domestic stuff to do (it's been a very boring day of annual leave!)

Good luck hope it’s sorted !!

Hello! You sound like me, I've got a 7 year old, non verbal, incontinent, can't get him to toilet train, bowel issues, in a base within mainstream, got a neurotypical 4 year old who is polar opposite, wants to socialise, do everything, talk to everybody and trying to manage them is madness!

Also thanks @mumofoneAloneandwell for this thread, will follow with interest.

I'm up north in Scotland so provision is different, but any tips for the upcoming Easter holidays will be gratefully received. We don't get after school allowance as they won't take ASN kids (or SEN as you call them in England). V frustrating and means I'm buying annual leave at work and trying to juggle it all.

Edit: also meant to add that sadly my 7 year old has started being violent to himself, hits himself, punches himself, screams, cries if things change or we ask him to do anything. It's like walking on eggshells constantly. Happened on a car journey recently the four of us and our 4 year old was cowering in his seat and told me he was scared, I felt awful. We couldn't stop it. I wish I knew what to do or say. School are being supportive but it's a rough one right now.

@ImMissingMumIt's so hard isn't it. My eldest also has severe continence issues, and we receive absolutely no support with this. The Continence nurse was only bothered about constipation, once it was clear that he's not constipated they didn't have any further advice. The Sensory OT feels its his underdeveloped Interoception. Which makes sense, but doesn't help on a practical level. But solidarity, as I'm right there with you.

Just a little update as I haven't been on for a while. We were heading to Tribunal as the LA refused a Specialist Provision for our eldest. I submitted my parental evidence statement and the LA backed down straight away! He starts at our chosen Specialist school in September 🎉🎉

@SleeplessInWherever You have my sympathies. Adult disabled DD is supposed to have a fasting cholesterol blood test every year.

They have been trying to do it since January, but she has refused so far. (Her care home has onsite nurses; and an onsite GP practice). We are bringing her home tomorrow for a week for Easter - she comes home 30% of the time. I think we might have to book a hotel up there, when we take her back on Tuesday, so we can take her the GPs first thing Wednesday morning, because we can get her to do blood tests, urine samples, etc other people can’t!

She did have to have a general anaesthetic for a lumbar puncture as a teenager at GOSH, and IV sedation for a root filling once at the SEN dental service.

@mumofoneAloneandwell Strictly speaking he's not my DS, I am a foster carer he's the youngest in our family as my birth children are grown and live independent lives now. He may not be my birth child but I love him unconditionally and he's a huge, huge part of our family. He will be in our lives and in my home for as long as he needs us. He has a rare genetic condition, he's one of a handful known cases.

Morning all ❤️

Got to try and get out and about today.

@Seawolves youre amazing 🥺. How lucky you are to have eachother. Family isnt just blood, its choice.

Bless him dealing with this condition - i imagine you're having to deal with lots of doctors to manage it, being that it's rare 🥺 xx

So shite start to the month here

Dd's dla appeal, that we waited 18 months for, was refused. I didnt do a good enough job of convincing them

I feel awful 😔