Our SN area is not a substitute for expert advice. While many Mumsnetters have a specialist knowledge of special needs, if they post here they are posting as members, not experts. There are, however, lots of organisations that can help - some suggestions are listed here. If you've come across an organisation that you've found helpful, please tell us. Go to Special needs chat, Parents with disabilities, SN teens, SN legal, SN education, SN recommendations.
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.
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?
And for Reception, maybe SN school won't be the right place for DS3 - I have actually found an MS Primary, local to me (NOT my DS1 & DS2's current primary...) where the staff already use Makaton with another pupil, where they are very good with DC's with SN's, that I am seriously considering for DS3.
BUT MS Nursery isn't the right placement for him. SN Nursery is.
'Could I lose my DC's?'
I know it feels horrible because it is unjust, but there is nothing from your post that makes me feel you have anything to worry about.
I would advise though, to play humble pie and pander to egos. Don't go on the defensive or the agressive, but be neutral and bland and wave away the HV's concerns with a wave of the hand and a small shrug for a professional who is doing her best with limted information.
I had a similar situation, and had nothing to worry about but made things far worse by challanging assumptions, stating my rights and responding to every criticism. It dragged it out far longer than if I'd simply said 'oh gosh, thank you for coming out, I feel we are all fine, doing our best, while you experts are here do you have any advice or help you could offer? Oh just to empty my bin when it isn't quite so full and ake sure my children never get their lunch past half one, oh and you are saying that we aren't bad enough to have any support that costs anything? righty-ho. Thanks for popping by.
So do I have to give up on fighting for what my DC's NEED, yet again?
It just seems to go round in circles - I've told the new HV that while I feel SN Nursery is the right placement for him, I'm hopeful that MS school will be appropriate in 2.5 years time.
The specialist pre-school assessor agrees with me, so why has the old HV (who wasn't actually a 'trained' HV, she was a nurse who used to work with severely disabled DC's, which I think has skewed her perspective a bit, who is training to become a HV) got such a bee in her bonnet about the issues I'm having with MS Nurseries?
Every MS Nursery I can get to has stated that they cannot guarantee that they will be able to wipe every child as they come in, that they will be able to wipe every child as they get up from the snack table to go play or go to the toilet.
Which, in the scheme of things, are fairly minor adjustments.
But adjustments that can stop my DS3 from having an allergic reaction. Which I doubt the preschool would pick up as quickly as I do, and would land him in hospital in anaphylaxis, having had to use his Jext pens.
That's aside from his hyperactivity issues and his 'possible' Autism issues - that he is being assessed for in May.
Why is trying to do the best for my DC's looked on so badly?
And no, I'm NOT over exaggerating the severity of his dairy allergy - even a crumb of chocolate ON HIS SKIN gives him a severe reaction, it really is an allergy on a par with the most severe nut allergies (which he also has...)
His speech is still severely delayed, even his latest SALT report states this. The SALT report also states about his inattention issues.
Waiting lists are far, far too long for SN places for any child to get one without meeting the criteria. It just doesn't work like that.
HV are part of health so NOT education system experts - the pre-school assessor is. The MS placements couldn't handle his needs, they know their own settings better than a HV too.
With anything as parents we have to try follow the appropriate professional advice, which you have done to the best of your ability.
The HV is the lone voice of dissent at this point amongst the professionals and should be taking it up with her peers, rather than allowing you to get caught in the middle.
I wouldn't take my dentists advice over my GP's over a pain in my bum
I get you, but the SW is 'concerned'.
Mind you, he is also 'concerned' that neither the Primary nor Secondary invite parents in for IEP meetings, and just send the IEP's home.
And he is 'concerned' that despite outside involvement, DS2 is no longer on either SA or SA+, because he has 'mostly' caught up, educationally to the very bottom of his age group.
YES his reading ability is now 6 months over his chronological age - but his comprehension is still below (so he can read it, but not understand what he's reading...).
His writing is WAY below his chronological age, due to his physical disabilities, and the fact that despite promising a writing slope before he even started in YR, he still doesn't have one in Y4...and no other adjustments either, no laptop etc.
CT said that 'due to the NC changes, there will be far less reliance on computers in future, so a laptop isn't appropriate', yet she also says that he has many ideas that he can't get on paper because of his difficulties in writing, and she has no doubt that when his writing improves, he will jump ahead academically, so not to worry...
Which says to me that DS2's ACTUAL academic abilities are being hindered by his physical disabilities and the lack of adjustments for them...
Yet as soon as I fight for these things, I'm 'over exaggerating'...
Despite a report from the orthopaedic consultant stating that DS2 has 'severe Hypermobility', and kyphosis, and the fact that he needs hydrotherapy for his joints...
I can't get the simple adjustments my DC's require without forking out money I don't have for private assessments, and paying for the equipment personally.
Which riles me.
Doesn't help that when I'm in meetings, as soon as I get frustrated, I cry. No matter how hard I try, how much I don't want to, how hard I try to manage it, in ANY situation where I'm frustrated, my eyes leak.
Which makes me look bloody unbalanced. Which I'm not.
How do I stop crying from frustration? I feel people don't take me seriously when that happens, but I genuinely can't help it, even when I try!
I do the crying thing too, it is just awful. Yet at work I'm quite an able advocate, so I know I can do it! I'm better when I'm not pre-menstrual (which feels like most of the time right now) and if I plan and prepare well and take in notes, treating it like a work thing helps, as does taking someone but that only happened once when our fab HV came. An old manager I had who always seemed super-confident said she used to imagine herself as someone else, could you channel a bit of Starlight or another MNer, I tried that last time, tried to imagine the power of MNSN behind me, it helped a lot and I didn't cry.
I think with SS I'd approach it from a "yes, things are hard because of these things, not helped by these things and these people, i know things could be better and have done everything in my power to sort this out, but am constantly hitting brick walls, I'm actually really glad you are here to see the whole picture and am looking forward to finding out what you can do to ensure that my children's needs are better met?"
I'm going to look at your last paragraph, in respect of each child, and write down those things.
Don't know who, if anyone, I would be able or allowed to take in with me though - are there any advocates or something that could come in with me? I don't have friends I would take with me, both my closest friends are known to SS for prior DV issues, and also don't really have a clue when it comes to SN's.
I would feel so much better in these meetings if there was someone there 'on my side', so to speak, but who? I go to these meetings, but I never feel 'heard' or like there is anyone to point things out on my behalf, or to argue against things that should have been done but haven't been, to ask those questions, or to help make me feel stronger when faced by X, Y & Z, with their own agendas, often not the same as each other, often contradictory or trying to pass the financial 'hit' onto another department...
I don't know, I just want what is best for my DC's, I want them to achieve THEIR potential, which I don't feel that they are. And when I fight for the help that they NEED in order to fulfil their potential, it ends up in SS's hands each time.
So I back off, let things drop, and all the while, my DC's aren't getting the help that they need...
I asked to go on a parenting course for older DC's, got put forward & everything...but they have no crèche, and I have nobody to leave DS3 with, so I couldn't go.
Having DS1 school refuse the other week can't have helped me any, either.
Being premenstrual DOES make it harder. I've never really worked in an environment where I've had that many frustrations, either.
So I don't have that to draw on, either.
Reading about FII, and they could use so many 'pointers' off there about me - yes, my crap childhood is true, but why is it still being used against me in my bloody 30's?!
Yes. It can help if you take the 'under cover reporter' and behave as if the whole of MNSN are flies on the wall. It helps you to stay measured, stick to the facts, not say silly things and not cry, and you can challenge any stupid utterances in your head rather than real life as you can simply think 'wait until I tell the people in my computer THAT', rather than get into an argument about something petty at the time which will probably do you no favours even if you're right.
'yes, my crap childhood is true, but why is it still being used against me in my bloody 30's?!'
It's not. They have to show a clear link. Honestly. It's horrible and half of the misery is the unfairness, but you'll get through it.
This sounds similar to something I went through 18 months ago. I did what Poultergoose suggests and basically said "What a relief to have someone at last who cares about my children as much as I do and wants only whats best for them. Please can you help me to get their needs properly assessed and get the professionals to communicate effectively and get their facts straight.". I was accussed of over-exaggerating my dc's medical needs and causing too many medical appointments. I dug out every single bit of paperwork I had on each child and gave the sw photocopies. So every clinic review letter, every A&E visit, my old diaries with appointments in, everything basically. I highlighted on them where the facts were wrong in the letters (e.g. "mother says" when in fact "Mother" as they seem to put it wasn't even present, incorrect weight / height, basically everything that was wrong however minor). I invited the sw and the ss family support worker into my house on a regular basis for them to assess whatever it was they were assessing. I invited them to the medical appointments which was a blessing because they found out that it was the medics generating the appointments not me as just "we'll see you in 3 months time" without any outcomes being required. We had CIN meetings which I insisted EVERYONE who had ever been involved was invited to.
Before long it all came tumbling down around the medical team who had been the ones to make the call on me. They were shown to be incompetant and more to the point to have failed to meet either childs needs and that all I was doing was trying my hardest to get someone to listen to me. The result was my DS was properly assessed by an OT and dx with SPD. My DD was referred regarding her walking (but sadly probably too late) and other medical issues. I got help with a DLA form for my DS and I got respite once a week. The my dd's school was slapped on the wrists for failing to meet dd's educational needs (she's G&T in 1 area) and failing to meet ds's educational and safe guarding needs when he was there (we took him out because he escaped and they didn't even tell us).
I'm not saying it wasn't awful and I didn't fear for me and my children through the process. It was the most stressful 6 months of my life if I'm honest but as a result I have now got a team of people working for me and my children and who wouldn't dare question what I say about them again (except 1 paed who still thinks he's right and didn't deserve to be told off).
So be open with the sw, be friendly, don't be obstructive in anyway, ask for help.
You do need to ignore the pseudo-HV and her opinions (for that is al they are) and focus on the helpful professionals. If the SW brings up what old HV said you nod, say you understand that is how she saw it at the time but since then you've had involvement from more appropriately qualified professionals who disagree. So don't say you disagree IYSWIM?
Clearly you have stacks of third party evidence relating to all your dc's difficulties over the years so step away from google and forget FII.
Use the social worker, this may be the only professional whose role is to assess your family unit as a whole, rather than all the various professionals who only see their little tiny part of the whole. Be honest about what is easy, what you need support for and what is impossible and needs someone else to do. Tell the SW what you need from this. Would you accept having a family support worker come in? If you would then say so. Keep bringing it back to what they can do for you.
We will be there with you (in spirit) so even if you are on your own you won't be alone
Thing is, it's all so much that I can't even make clear sense of what is needed!
DD : has dxd leaky heart valves, (one at the top and one at the bottom) I think they're causing issues with tiredness - not many 15yo's need a nap after school, do they? She hasn't been seen by the cardiologist since she was 12, cardiologist said that as things weren't causing too many problems (which they weren't, as much, then), she would be seen again at 16 - but I have no idea if DD is still even down to be seen.
She was dxd with Hypermobility when she was little, it's still there, she has issues with her knees every couple of years (water on the knee etc), take her to GP who advises strapping it up or having fluid drained. DD refuses draining, fear of needles, so we strap it up as advised. Now deal with that without GP because DD isn't going to get it drained, so strapping is all we can do.
DD was dxd with GDD when tiny. She still is quite some way behind her peers in academic stuff and social stuff and emotional stuff.
DD had SALT issues, mostly corrected, discharged from SALT at around 6-7 ish. Speech still immature, mispronunciations, etc.
DD was dxd with dyspraxia at 4yo. Took ages to even get her to cross her midline - she wasn't able to do this until she was 10-ish.
Her organisational skills are non-existant due to the dyspraxia.
I have been TOLD by her LSA that she has dyslexia & dyscalculia, but no formal assessments. If I want formal assessments I'd have to pay. Which I can't.
DD has LD's, and has been on SA+ since she was 3yo at school Nursery. I don't believe that in 12 years, DD has made as much progress as she should have.
DD's Paed, when she was 4yo, told me that DD was 'definitely on the spectrum somewhere', handed me a load of leaflets, and left me to get on with it. If she doesn't have Autism, I'd eat my own shoes.
DD holds it together just about at school, now (she didn't in primary, she used to just walk out of the classroom if it was too noisy etc), so the school don't see the meltdowns she has at home when she is no longer trying to keep it together.
DD had a soiling issue until she was 8yo, (on Lactulose on and off) and a bed wetting issue till she was 12y7mo. She went on the waiting list for the enuresis clinic at 4yo. She got to the top of the list, and I was offered an unreachable appointment 2 buses away over school run time when she was 11+yo.
I asked for another appointment, they said they'd ring me. After 2 months, they hadn't rung - so I rang...enuresis clinic disbanded!
She finally got offered an appointment at age 13, 5 months AFTER she had stopped bed wetting!
I don't even actually know WHAT help DD gets at school any more - the Secondary never has meetings where they call you in.
Tbh, I've let the ball drop a bit where DD was concerned, since her choosing her options last year. I haven't seen anyone at her school except for parents evening since then.
My only explanation for that is I've been trying to deal with DS3's issues...
It IS on my to-do list to book an appointment with Learning Support at DD's school after the Easter hols.
(In Essex so we've only just started the 2nd week of the hols here)
There's probably more, but it's a lot to remember - there's her hearing issues & ENT, plus the fact that a few years ago, in primary, the SCHOOL brought up that they were concerned that she might be having absence szs, but that was not borne out by the EEG. (They brought that up with no knowledge of my own epilepsy!)
Just to say a big thank you for all the advice you have given me about dd . Ss do not need to be involved with you .Y our Hv sounds like my dds portage worker who is the only pro who thinks she should attend a unit not a ss
No help on how to teach DD organisational skills etc. not even sure where to go to GET that help!
No idea whether the help she gets at school is appropriate to her needs - but hard to know when she hasn't seen an EP since Y6, and is now in Y10...
(Getting to see an EP in Essex is nigh on impossible - DD was seen in Y2 & Y6, despite being on SA+ since 3, that's IT!!)
i wish i had something to add, but i dont.
our 'malicious' case was closed in 11 days. i lost a stone worrying in that time.
i wont even ask for respite because it involves those fuckers.
sorry, nothing useful to add, but a bump for good measure. x
Again, no useful advice, Couthy. Hopefully some of the others have helped. Much empathy and honking, though. You really don't deserve this. You help others on here despite your own multiple issues and a blind wombat could see that you have your DC's best interests at heart.
I could go on, and list DS2's issues - maybe later.
I was thinking maybe someone could tell me what would actually HELP my DC's, where I can't see a clear path?
I know I'm shitting bricks about post-16 for DD - and I'm being given NO help whatsoever from the school on which direction to even look in. She's not going to get the grades for the course she WANTED to do, that much is already apparent.
She's too advanced for life skills courses.
I can't find anything suited to DD personally locally that she meets the grades for.
I don't know where to go or even who to turn to for careers advice and support, as we don't HAVE conexxions here any more, and DD can't access the SN transition service because she doesn't have a statement...
There just seems to be no help out there, I'm bloody floundering, despite what it might seem like on here, and every time I push for help / support, SS get involved.
It IS spectacularly BAD timing for DS1's dad to have rung SS, granted, but it's a backlash from when I had to call SS on his partner last year as she had bruised DS1 (who hasn't been there since, only sees his dad 4 hrs a bloody fortnight now...).
He just couldn't have chosen a worse time tbh. Git.
Leonie, this has been rumbling on since I first mentioned it on Moose's thread.
And yes, it IS the reason I hadn't asked SS for help before now!
I can't understand why all these Authorities seem to stand as one against parents who just want THEIR DC to achieve their full potential, and need help or adjustments made in order to do so because of dxd issues.
I want DD to be able to go to college and to be able to find employment when she leaves college.
I want DS1 to be able to cope socially with his peer group, and to achieve what his IQ shows he should be able to achieve, but isn't.
I want DS2's physical issues to have the necessary adjustments made for them, to enable him to get everything in his head down on paper so that he can SHOW that he's cleverer than given credit for at school (which he is).
I want DS3 to attend an SN Nursery with a view to reintegrating into MS at Reception age, provided all his issues can be taken care of at MS school - which is a bridge I haven't crossed yet as I'm still more concerned with Nursery, as Nursery is 5-9 months away, and Reception is 2.5 years away.
I'm understandably concerned that there doesn't seem to be any real attempt at early intervention, maybe on paper, but nothing meaningful, despite it having been common knowledge for at least the last 15 years that early intervention is the best thing in terms of outcomes.
SALT consists of basic observations, Makaton worksheets home and not much else between the age of 2yo & 3yo (apart from the seemingly ubiquitous "give them carrot sticks to eat"...). Where are the assessments? Where are the starting points to measure progress? Where is the actual dx of WHAT the specific SALT difficulty is? Where are the therapy sessions? What directed therapy would be best for WHAT DS3's issue is?
It's all just so airy-fairy, when I believe that proper early intervention would prevent issues like DD is having now - yet here I am watching DS2 follow the sane path, and now it feels like I'm following the same path again with DS3.
OK, DS1's issues present VERY differently, and his path is one I haven't trodden before - but the other 3, it's like watching history repeat itself. Twice.
And the sheer FRUSTRATION of that is killing me!!
It's like when DS3 was tiny, just a few months old he had an odd shaped head due to getting stuck in labour. He was sent to Physio, who did nothing (except tell us we could pay thousands for a special helmet, but they felt it would right itself, and if it didn't, it's only cosmetic after all (!) and the PCT doesn't pay for cosmetic stuff like that anyway).
I had noticed his joints were hypermobile, not an odd thing to notice given the dxd family history...
The Physio denied he was hypermobile, told me it was impossible to tell at that age as all babies are floppy etc etc...
Fast forward to DS3 being 22/23mo...and Physio dx him with Hypermobility.
<<Bangs head off brick wall>>
Why do they all assume I know nothing?!
I also mentioned the 'turn in' of his feet at the appt when he was tiddly - only to be told it wasn't abnormal for a baby's feet to turn in.
And yet now, at 26mo, he is under orthotics for orthotic shoe inserts...
<<Bangs head off brick wall, again>>
If people had listened to me then, he could have had these inserts long ago (which are making a difference), as soon as he started walking...
I sometimes feel like I'm going to implode from sheer frustration...
I wish I knew what to say.
You sound like a dedicated and passionate mum.
They should be able to see that.
Join the discussion
Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.Register now
Already registered with Mumsnet? Log in to leave your comment or alternatively, sign in with Facebook or Google.
Please login first.