Seeing senco tomorrow

[MiscellaneousAssortment]

Any advice very very welcome?!

Two week ago I didn't even think of DS having any special needs and it seems that's not true. Had a thread in primary schools and loads of advice, including to come over here and get even better advice :) I love mumsnet sometimes. Better support and advice than I could ever have got...

Anyway, trying to summarise but not v good at that:

DS family background has been hard and I think he needs help just for this. But is that what a senco might reasonably do? Tbh I have no idea about this stuff, though am disabled myself I wasn't / wasn't diagnosed until 5 yrs ago so this is a very new world.

Sorry back to family background:
DS 5yrs old, and I became ill with EDS & autonomic stuff around the same time. I'm severely disabled now, carers, mobility scooter & sticks, mainly bed bound etc. Turns out my sister died of it approx 8 yrs ago after a horrible and brutal life, though not diagnosed in her life, but what she went through helped me get diagnosed. My dad died of it earlier this year. I don't know if DS inherited it or not :(

DS sees me be ill and different, was in hospital this time last year and he's still pretty nervous of that time :( my dad came down to help. Don't know what we'd do now. We don't have anyone, not even close friends.

DS father was / is an awful man whose abuse got a lot worse when I became ill, useless and ugly (financial, emotional, social, sexual, and in the end physical, causing an injury that has permanently disabled me and causes huge pain. Lovely permanent reminder), and he was never ok around DS, no direct abuse, a lot of neglect. Probably some residual stuff there, he feels abandoned and doesn't understand why daddy doesn't see him anymore. He also has a bad reaction to any shouting or loud noises from then. I got us away and he doesn't know where we are though we're not hard to find via school if he tried. He asks other people if daddy's dead because he thinks that's why he's gone like grandpa, who DS loved like the daddy he didn't have.

I'm not saying his stuff because I'm blurting, I'm saying this stuff cod I want to know if it's reasonable for a school to understand and support him?

Then the physical stuff. He's been very deaf for ages and is having an operation next week to see why - he won't let them touch him awake, too scared. I've tried doing play stuff and the play specialists tried at our patients, but I think it's deeper than just being scared, he's utterly terrified of pain. From seeing me like I am :( even playground falls terrify him, and I also need to know if school should be knowing and helping when it happens at school?

The reason I originally posted was because I finally realized that his yr 1 teacher, lunchtime and playtime and sports etc are all telling him off for 'not listening'. And he's now so scared that's when I've reached and am trying to stop it. He's missing loads and I don't think he knows what's going on at school, or hears good stuff said and no first warnings just straight to big punishments which he gets scared about as they're not explained to him and he's fretting that he'll have to stand against the wall after lunchtime and won't be allowed back into class etc...

It's all a bit much and I'm trying to be the mum he needs and go sort it out but I'm in pieces for some stupid reason and he keeps seeing he cry and basically, I'm making it worse :(

Sorry self indulgent.
Mehta do I need to know about senco a and what's their job remit when it comes to anything more complicated than tell people that telling off a half deaf child for not listening is bloody stupid and cruel (ok, I think she'd say that differently!)

[Youarentkiddingme]

Sorry to hear how tough the past few years have been. But be round of everything you've achieved

I agree with being blunt with senco. I find asking them direct questions about what they intend to achieve gives direct answers. It helps everyone be clear, know where they stand and support your DS.

[MiscellaneousAssortment]

Thank you. Am not having a good few weeks. Can't believe I'm falling apart when I need to pull it together for DS. Ffs, I need such a bloody awful mum. I was crying in the bathroom writing the first post and while I was wailing DS came into my bed and fell asleep, without me noticing or hearing. I hope he didn't realize I was crying. I think he probably does. M

I'm taking him to the gp tomorrow to check out the tummy ache he gets every night. Wonder if it's anxiety or physical, and how to talk to gp while DS there and not cry. Crying is becoming a thing. Not good. And going to get worse. Christmas.

[MiscellaneousAssortment]

Yes I might do that...I think I won't mention anxiety as a possible as I know once you're labelled as being anxious everything in the world gets blamed on that.

(My sister was told she was causing her pain, swelling and other symptoms by her anxiety, and it was all psychosomatic and oh the surprise when it wasn't over and over again. Ffs).

I wonder if I howl earlier in the day when it's the senco appointment, maybe I'll be howled out?!

God it's horrible feeling such a wuss when you know you've got to steel yourself for your child.

Anyway, I'm very grateful for people being kind and patient even when am blurting and howling!

With the senco can I suggest things like social stories (yes I read a lot of threads on here!), to help DS catch up with understanding the rules and procedures in school/ in the classroom, as I think some of his anxiety is coming from not knowing what to do when, and I'd love for someone to go through and help him get it, not just say he should have picked it up by now or tell him verbally and expect him to grasp it and remember it... And ideally I'd like to know these things too to help him at home and keep working on helping him, not just the teachers at school?

Is that reasonable? How do you persuade a teacher that what's happening from their perspective is just not what DS is experiencing, and definitely not what he's interpreting from what he experiences?

The class teacher was totally taken aback when I saw her on Monday as hje thinks she's only told DS off twice ever (in perfectly reasonable circumstances), yet he thinks he's constantly told off and not just that, he tells me specific situations that have happened such as not understanding / not doing something right and being shouted out for that... so so it's not just a general sense of dread happening (though I'm sure that's happening too).

And because he's academically clever he coasts and seems to be doing ok (when I suspect without all this stuff he'd be doing better than fine) and socially aware, he covers up how he's feeling and what he doesn't know/ his confusion and disorientation.

Frustratingly, I know he's quite capable of telling them the exact opposite of what he's told me when I try and loop back in and sort something out - he can finish sentences when prompted even if he can't really understand it when not, and he's very convincing, if I was the teacher i may well think 'hysterical mother projecting own anxieties into her son'.

[tokoloshe2015]

There is more and more evidence about the way trauma (such as DV, neglect, abuse) etc affects children's ability to learn.

Some of these resources could help (developed for LAC, but of course most are looked after because of traumatic experiences in their birth family, and they are not lucky enough to have such a caring and committed parent as your son has in you):
traumasensitiveschools.org/

www.essex.gov.uk/Publications/Documents/Supporting_Adopted_Children_In_School.pdf

[MiscellaneousAssortment]

Anxiety yes for senco, just no for GP I think.

Can't give them a reason to start dismissing him so young.

After shockingly bad GP care for my sister, (& my father, and me), has left me absolutely terrified of GPs and the way mental health can be used to justify patient blaming and incompetence. Though I hope family experiences are an anomaly vs the norm, but I can't ever let that happen again and I don't feel like they're the exception as I've seen it happen again and again with devasting consequences.

They blamed everything on her 'anxiety' such as when part of her intestine dying and going gangrenous inside her, all ignored and belittled as anxiety as the decomposition gases inflated her like a fucking ballon, but no nothing's wrong, and did she maybe want a baby as she's 'making herself' look pregnant... right up until the heart failure and collapsed lungs, crushed by the pressure of the decaying gases, an hour and a half trying to resuscitate, asked asked parents if they'd like to stop, them begging not to, then the weeks of coma and danger of brain damage, the blood poisoning and sepsis from the 'imaginary' intestinal decay, and her terror and horror when she woke up and being held down as she tried to rip the ventilator out, and the nightmares then her horror as she realises she's got a stoma to add to all the other scars and damage ravaging her poor body. Oh but just anxiety. Then the 'we never learn from our mistakes' so blame the left arm and shoulder pain, jaw and teeth pain on anxiety... Which was actually the aneurism that killed her. But all dismissed as anxiety. Can you imagine how fucking anxiety creating it is to know something is terribly wrong and be accused of making it up or causing it yourself, knowing you're dying and still being dismissed :(

[MiscellaneousAssortment]

Thanks PolterGoose. Was a useful day I think in the end, though wasn't able to really have a proper discussion with the SENCO but she at least agreed things were a proper problem about the wider issues, felt defensiveness re hearing issues though but just scratched the surface with it all so not quite sure. There was a definite 'mother isn't coping impacts the child' undercurrent so am wondering quite what I've started.

Outcomes:

1. She wants medical evidence of hearing (will hospital do a back dated one? The other letters haven't been detailed at all, and it might all change on Friday...)
   
2. She's going to contact CANBS (sp?) and ask what services are available.
   
3. And write a social story about normal pain/ injury - was a bit non plused by this as I had this in mind for school routine as a good idea but given the complexity of his fear of pain/ injury, and that we didn't discuss even the bits I know about it, I can't see how that's going to be very helpful? Not sure what to say / think about this?
   

The GP was actually alot less confusing and was surprisingly super helpful (you can imagine what a relief that was considering earlier posts)... We discussed anxiety and the multiple factors involved (headings, not details eg father gone, legacy of h abuse (to me but indirectly to DS) showing itself now, my health, grieving for grandpa, etc... And she was v supportive about the senco meeting & also said if that didn't help there were other routes to help DS and to come back to her. Could have blown me down with a feather!

Any ideas what GPs can help with?

Also she said to ask senco about getting in touch with an educational psychologist. Except I bloody didn't argh!

[Ineedmorepatience]

As polter suggested further up thread you should follow up your meeting with the senco with an email summing up briefly what was said and agreed. This is to confirm that you and she have discussed the things and to start a paper trail.

It will also remind you and she what you have said you will do. In the email you could mention that the GP suggested an EP although I have a feeling that you may have to wait a while for that.

Glad both meetings went well and sorry that the system fucked over your sister so badly

[Youarentkiddingme]

Glad gp appointment was positive, it's a start!

Totally agree about following up the meeting with senco with an email. Give yiurself time to digest everything said and discussed, note down what was agreed and send it in bullet point style!

The hardest thing to do is keep emotion out of emails - hence why do it when you've had time to digest - but it's the best thing to do as not to detract from the issue in hand.
I save my crying for face to face conversations

[MiscellaneousAssortment]

A lot didn't get covered, should I push for another meeting?

I felt the meeting on Friday wasn't very productive and I want to change that somehow... It's like it's either not important enough and doesn't exist, or super big and therefore not their job. How do I get them to actually engage?

[blaeberry]

Once you have written your email confirming what was said and agreed outcomes of your last meeting, how about ending it with a suggestion/request that you meet again in two weeks to review how things are going?

[Youarentkiddingme]

What blae said.