SS...

[CouthySaysEatChoccyEggs]

Right. About 5 weeks ago, my DS1's dad rang SS and told them that I was 'making things up' about my DC's health.

SW came out, saw massive bundle of 15 years worth of medical paperwork.

I thought that would be case closed.

Nope.

SW spoke to health, namely the old HV (not my HV any more...) who said she felt that I was 'over-exaggerating' their health issues.

Why would she say that? Because she advised a MS nursery for DS3, yet MS Nurseries all said they don't feel that they can manage DS3's dairy allergy without FT 1-2-1 help.

So I personally found a perfect SN Nursery.

Also had a specialist pre-school assessor out to decide about Portage.

She said her report to the pre-school education board would be sensory integration therapy, Portage in the home until DS3 starts Nursery, and a recommendation that DS3 attends the SN Nursery that I had sourced!

Old HV disagreed, stating that she felt that he needed to be around 'developmentally normal' DC's at Nursery for them to model 'proper' behaviour to him...

Ultimately though, pre-school assessor agrees that he has issues, SN Nursery teacher and HT agree he has issues...

BUT, as old HV has said I'm 'over exaggerating' DS3's issues, the SS case isn't closed and he wants to cone out again on the 15th.

Are they looking at FII?!

I'm actually scared now.

This happens every time I try to push for the help that my DC's need.

I'm NOT over exaggerating their issues - health wise they have the dxd issues they have, and they also have the other issues that aren't fully dxd that I'm currently attempting to get dxd. (Autism - currently DD and DS2 are down as 'Autistic traits' but have never had a formal assessment.)

What do I do if they are looking at FII?!

I really need some help and advice here.

To put things in perspective, I have had prior involvement (10 years ago) with CP, on the basis that when DD was born I was still under 18 and on the 'at risk' register myself, which meant that DD automatically went on there.

I had ongoing issues for about 4 years (I drank too much for a bit, I lost twins and asked SS for some support as DD was hard to manage and they put her in FC for 2 weeks about 14 years ago...)

I'm now tee-total, and that issue has gone.

No proper involvement from the for 10 years except when they have received malicious calls from Ex's - about 6 times previous to this one, last one being around 4 years ago, but before this, nothing major - come out, see the house & kids, then close the case.

SW DID seen shocked by the fact that neither the Primary or Secondary here invite you in to do IEP meetings. I know they should, and tried to fight it for the first 4/5 years of being here, but I just accepted that at these two schools, they don't do that - which they don't, it's not just me they don't bring in!

These issues AREN'T fabricated, they are really very real, but I get threatened with this every time I try to push for the help and support my DC's should have.

Is it because I'm in North Essex?

God, how bad is it if they are looking at FII?

Could I lose my DC's?

Is there one of the dc's professionals who you trust who can take notes for you?

Not really, they all seem very 'connected'. Except maybe the Orthotist, but his input is very minimal bar providing orthotic shoe inserts. Tbh I doubt he'll even go.

Trainee doctors often record video-consultations for learning purposes (with consent, natch) so it's unlikely that any GP /paediatrician will object to an audio. Especially if you ask in advance before the other call: 'You don't want this dreadful loony-mum taping you? No, thought not'

It might perhaps be worth agreeing that you would only keep the tape for long enough to prepare a transcript for circulation and agreement. Or maybe to offer a copy of it to everyone present?

would your epilepsy worker come to minute-take? especially relevant if they've refused 'reasonable adaptations'

'Epilepsy worker'?! In my PCT?! No such thing, other than the Neuro...

I might be getting confused but wasn't there someone quite good from an epilepsy charity who helped you with some of your own issues ages ago? Was pretty good at dla forms but didn't do any kids' forms??

No, she wasn't from an epilepsy charity, it was just a floating support charity - it's a shame she doesn't deal with anything to do with the DC's, or I would have asked her, but this won't be in their remit.

Not to help the dc, more like an advocate to help you liase with professionals unhampered by concerns about communication / memory / having a seizure mid-TAC / crying. Like an interpreter for someone with English-language problems, or a note-taker for a hearing impaired parent.

I'll ring them tomorrow but tbh, from what I recall her telling me is that it's not in their remit to do that kind of support, it's more about form filling and organisational stuff.

Do you use a local children's centre? Someone from there might be able to come with you and take notes, or homestart or barnardos.

PP officer a no-go, still not one in my area. Children's Centre a good idea. Can't do Barnardo's as the lady from there was working with the old HV that disagreed with me about SN Nursery, and I wouldn't feel totally that she was there for me, IYSWIM.

I've thought about it, and tbh, I'm a lot less concerned than yesterday.

Nobody would tell somebody that needed a wheelchair that that wheelchair, an adaptation for their disability was 'stigmatising'. So to say that a writing slope for a severely hypermobile DC is 'stigmatising' obviously looks odd on the HT tbh.

So, the old HV and I disagree on Nursery placement - ultimately, if the education board are recommending the SN Nursery as the Specialist Pre-School assessor has said she will, and I and DS3's dad have PR and it's what we both think is the correct Nursery placement, despite not being together, then it's not just my opinion, it's backed up by an LA employee...

I need to back off on the pushing for the school to pay for things - I might ask if I was willing to pay for a writing slope if they would accept that, to help his handwriting as I feel that he has so much more to offer academically if his handwriting catches up, but I will grudgingly accept no for an answer, and just use it for practice at home.

The SALT actually did a CELF test on DS2 today, which he aced, apart from his immature grammar and sentence structure, and a few past tense issues. She did note his stutter and the fact that he has a very mild stammer.

She has given me some tips to help him with these issues, and she will send out the final report, with percentages on, out to me.

Glad he is catching up, but it was typical that lots of the questions she asked were about two of his obsessions - food and animals.

So, of course, he spoke at length, in great detail, using quite adult language. Mostly because he avidly learns about animals, reading quite adult books about them.

Hey-ho. I'm glad that I will finally have a report to hold onto, and that I now have some tactics to correct the minor issues that remain with his speech.

I'm going to go along to the meeting, try to allay their concerns, explain that I am only trying to help each if my children to reach their full potential and achieve the best they can.

If they have specific concerns, I will happily address them and try to rectify them.

It doesn't change my DC's dxd issues, they can't change their mind at this point about things that have been dxd for years.

One bit of good news - DD doesn't have to resit her Science CA. She got a 'D'!!

So pleased with and for her.

Such a confidence boost - she got the highest mark in her class!!

So, I'm feeling much calmer and less panicky today. Maybe some good will come out of this meeting, if the HT is informed by DS2's Physio that she recommends a writing slope to aid his handwriting. Who knows.

I'm going to go into this meeting with an open mind, ready to hear them out, as it's all I can do.

I WILL be checking out to see if there is an advocate from the Children's Centre that might be able to come, though, that's a really good idea.

That's sods law with your DS2 and the SALT. The community paed came to assess DS1 for aspergers at school and of course he chose that day to play happily with one of the boys in his class and make me look like an idiot.

IME HV's are clueless about SN's. Mine didn't want DS2 to have a wheelchair despite him being unable to get to school without one. The specialist preschool assessor's opinion should carry more weight than the HV's. I find that HV's are good for asking advice about a non-SN PFB. They can give basic advice on sleep, potty training and when you should see the GP. But if you have a child with SN they are useless I find and it's like a toddler helping you with the housework. I may be a bit biased though as having some disagreements with mine at the moment. I think I'm the expert on DC with SN as I have 2.5 of them and she thinks she is because she's a professional.

Well done to your DD for the science thing.

It's just a case if playing the game. If playing the game gets DS2 his writing slope, then I don't care. If it means me paying for it, then so be it.

It occurred to me that as the school have illegally taken DS2 off both SA and SA+, despite outside involvement, they aren't actually getting any extra funds to support his physical issues with.

So the bluster from the HT about how a writing slope would be 'stigmatising' might just be a way of saying "we can't afford this". If that is the case, then me offering to pay for it and send it into school might placate him...

Play the game, Couthy, play the game!

One tiny aside - a 3 ring binder turned on its side makes a good writing slope. If you work with him at home on a proper slope but he can't have access to one at school, if he has a binder, it can work as a slope in a pinch.

Bee - currently the school won't even let him do that...

That is officially asinine.

could you ask OT/ physio to 'acknowledge the school's concerns about him being different' and get them to suggest the binder solution?

I will - tbh, the Physio has referred DS2 to the OT to assess him to see what, if any, adaptations he needs, but the appointment isn't until after the TAC meeting on the 25th - his OT assessment is on Thursday 9th May.

Which is a PITA.

She has referred him because she thinks he might need...a writing slope!!!