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?

Only DC that was in FC was DD - others weren't born then.

DS1, DS2 & DS3 never been on 'at risk' register, never been in FC.

By the time DS1 was born 4 years after DD, 2.5 years after DD came back from FC (which was only 2 weeks btw, not months on end), there were no concerns from SS whatsoever!

So they think someone of 31 isn't going to have changed since they were 17? Honestly?

I know far more now than I did then about SN's, I know far more about bringing up children in general, back then I was still a child myself, I'm not now!

Yes, back then I had an issue with alcohol - which wasn't great, but I had gone through the mill somewhat as a child, and was avoiding dealing with it at 17. I rectified that when DD came back from FC, and have never been the same since.

I can hear what you are saying, but I think that a 17yo whose DD with SN's that weren't fully dxd was in FC because they asked for some support 13 years ago, who also had an alcohol issue, is quite a different proposition to an adult with 4 DC's that is nigh-on tee total (I have roughly 4 glasses of alcohol a YEAR max) whose Ex is making malicious phone calls...

Yes, I can see why the need to check it out, but it feels like I'm never quite going to shake off the person I used to be, no matter how much work I put into it, at least not from the perspective of SS.

It will always be the 'cycle of abuse' thing. Which is bollocks.

Ach, I understand why, but it doesn't make it any less scary, or frustrating that every time I try to get the help my DC's need, I come up against a threat of SS, and now the reality...

Bump to see if anyone else has any advice. I will be back later to have a look, am going shopping for DS1's birthday presents as he's 11 tomorrow. Cake baked - red & black marble cake that I will decorate tomorrow.

I had a knock on the door myself due to ds2 latest escapade at the weekend. Perhaps I am being naïve but am regarding it as a positive at the moment - he had already chased up all our appointments before visiting and they obviously have more power than us to get the professionals acting. I think you are better trying to use this power to your advantage to get the help for your children rather than fight against them.

I know - I'm trying to keep the 'fear' in check, and work out what my DC's actually NEED to fulfil their potential.

Hence the 'stream of consciousness' posts on this thread - trying to make sense of it all.

It's very easy to get lost with trying to balance everybody's needs when you have 3 DC's with SN's!

If people could make suggestions if what I should be asking for help with, based on my DC's issues, I would be very grateful.

I'm hoping that they can move things along with education and health, but I am lost as to what is 'normal' to expect on the NHS and from the state education IYSWIM.

Possibly what they need is more usual to end up being paid for privately? But I just don't have the funds to do so.

So I'm looking for suggestions of what people think would be the best things to ask for to support my DC's so that I can work 'with' them, and maybe come to some compromises and find what will help and I can get funding for!

couthy - this is a wild shot in the dark - have they ever looked at your eldest dd from a FAS pov? I only ask, because you yourself have said that one of the issues at the time was alcoholism, and I know a couple of teenage girls with FAS who exhibit the same sort of tiredness etc - with them it can be mostly held at bay by diet. They both manage their tiredness with protein (I think the FAS has metabolic affects that can last throughout life?)

I'm involved with a youth group that takes these kids on residential trips, so I'm used to having to plan dietary fixes, and watch for signs of lethargy/ inability to concentrate etc. (that's not to say that dd doesn't also have a pre-existing cardiac issue - I think I have a similar one, btw I have leaky valves and was dx with a 'juvenile' heart murmur - I know for a fact I still have it as it is periodically mentioned, but it is now regarded as largely benign, although it caused no end of drama as a child)

I could of course be totally wrong, and I apologise wholeheartedly if so - I certainly don't want to add to your worries! It just struck a chord with me, knowing the girls in my group... And knowing that I have to make sure they are not carb heavy, and to load them with protein...

Anyway, good luck. I'd be using ss to push on your behalf, and seeing them as the way forward... Which may or may not be their pov, but it's worth a try. I've been in areas where ss, health and Ed work reasonably well together. Although, despite two with sn including cerebral palsy, as a 2 parent family we have never qualified for children with disabilities support. post code lottery.

I'm dyspraxic and I have 3 DS's who are hypermobile plus another (unplanned) baby on the way who has a cleft lip. DS1 has mild autistic traits. DS2 has sensory issues and limited mobility, he often has accidents because when he needs to go to the toilet he needs to go right now and then he struggles to get there in time. DS3 has the brain of a 2 year old (his actual age) and the motor skills of a 15 month old, he spends a lot of time tripping over his feet and trying to do what his eldest brother is doing.

I've had a recent clash with my new HV. She was concerned about my DS3's bruises, despite him falling over/diving head first into a toy box at least 3 times during our appointment with her. She called SS who decided not to take it further thank goodness but I understand how scary it feels. I've had previous contact with the disability team of SS when DS2 was a baby because the paed said they would be helpful. They offered help on their terms, eg they sent someone to take DS2 out when DS1 was at nursery. I'd asked for someone to help me take them both out to a softplay or the park and play with DS2 while I gave DS1 attention. In the end I ditched them and they wrote a charming report about how I was disorganised and exaggerating DS2's problems (when I said how long DS2 took to feed I included the time taken to express the milk and steralize the bottles).

Anyway, I have a couple of ideas that might help.

For your DD: laminated lists and a diary - I'm still rubbish at organising but the lists and diary help. Everything I'm doing goes in the diary, appointments, birthdays (with warnings for present buying a week or 2 before). Things I've promised the DC we'll do in the school holidays. Everything goes in the diary and I look at it every night. I have laminated lists for everything so I can tick things off and then wipe it clean for next time. Lists for housework, lists for the contents of the nappy bag. My brain seems to hide important information so I have it on paper instead.

For the HV: Give her something to do. I found with my old one she would want to weigh the youngest child every week unless I asked her to do something specific to help. Grovelling and flattery seems to help too. Mine was great at chasing up appointments and making phone calls.

For support: Barnardos - I found them to be like a non judgy version of social services who actually asked me what I wanted help with. I had a lovely volunteer who came round and helped me get a bit organised, helped me get DS2 to his SN preschool (I can't drive) and did it all with a friendly smile. I had them come round after SS involvement had finished but I'm sure they would be there for meetings with SS if you wanted support. DS2's old portage worker comes to his school reviews once a year to take notes for me and also we meet up beforehand to talk about what I want to say at the meeting. That's not really part of her job but she does it anyway because I forget what I'm going to say and also what other people have said.

Hope that helps

Ah - never drank a DROP whilst pg. At all. It was only when DD was 15mo that my issues with alcohol became an issue.

Besides which, before that, I didn't look old enough to buy booze. Mostly because I wasn't!!

Tbh, I've never drunk in any of my pregnancies. Not smoked, despite the fact that from the age of 11, I was a smoker. ALWAYS stopped smoking and drinking straight away.

My view on it has always been that I may choose to smoke or drink (not that I do any more...), but my unborn child didn't.

The first thing that alerted me to the fact that I might be pg with DD was the fact that I didn't want to smoke, and that was within a week of conception. Been the same every time.

I know I'm pg long before it shows up on a test because I stop smoking. And at that point, I don't drink a drop of alcohol either.

Nowadays, mind you, that's not even an issue, as I stopped smoking in 2009 after having pneumonia, and I stopped drinking in 2003 after my dx of epilepsy, as alcohol's not really compatible with epilepsy meds.

No worries - thought it might be worth a ponder if it was a possibility.

Hmmmm...didn't go too well, as they didn't seem to have had all the information from health - didn't even know about DD's dyspraxia - which she was under Physio & OT for years for, and still has issues with now. Yet they apparently spoke to health.

And apparently DS3 hasn't been referred to the community Paed - odd as he saw him, SW seen his report etc, he ordered microarray tests that can only be ordered by a Paed...

Grrrrr. I hate this. THIS is why I've tried to go it alone and not push for what the DC's need.

TAC meeting next Thursday. Am not looking forward to it tbh.

Definitely FII they're looking at - they've only really properly spoken to the two worst people to talk to - the lying Primary School HT, and the Old HV who disagreed with my choice of Nursery.

They spoke to health, who have taken some of my questions about has DD got this, or that (wanting answers as to why she's been dxd with GDD, cardiac issues, LD's, Hypermobility syndrome, dyspraxia, hearing issues etc.) where I had researched and different things had come up, so I'd asked whether they were possibilities, and the Paed at the time noted that I "thought she had X, Y & Z", not that I'd asked if it was a possibility.

The past history of involvement with SS isn't helping either.

Which is frustrating.

Tbh, I'm frightened of losing the DC's.

DS2 & DS3 would go to their dad's, and I know he would let me see them.

DD would only really have her dad's to go to - 600 bloody miles away from me on the top end of Scotland. And she only sees him for two weeks a year, and he's only been involved for the last 3 years, since she was 12. So she's only seen him in person for 6-7 weeks in total in her whole life.

DS1 would only have his dad & SM's to go to - but he hasn't stayed at their house since August last year, and he and his SM hate each other, she hurt him physically, and left marks, and I felt I had no choice but to contact SS myself. He would HATE to go there, it would really mess him up tbh.

I don't know, just the speed at which they are doing things is scaring me - speaking to DD alone at school on Friday, and DS1 & DS2 alone without me on Monday, then a TAC meeting next Thursday.

I'm scared now.

Take away a sibling group of dc with marked SN who would be 'hard to place' for adoption and expensive to foster? Not a chance.

and if your ex had the younger two, he'd soon be asking for expensive services too, and dads are often a lot harder for professionals to fob off than mums....

Would your paediatrician be present?
ask them if they'll hold the TAC at the hospital
and if not, get it formally recorded that you wanted the paediatrician invited

TAC is going to be at DD's school (I feel more relaxed there, and less like my opinions will be ignored). They asked if we could do it at the DS's Primary School, which I declined as it doesn't feel like Neutral ground.

They raised an eyebrow at that, as the HT had already had his say, but I was firm that I didn't want it there.

They asked to speak to DS1 & DS2 at their Primary School too, but I requested that they did that at my home, upstairs.

They did that with DS1 when I had to ring them about his SM hurting him, so no issues there.

Ugh, I don't know, I just don't want to lose my babies (well, one toddler and three older ones, but still my babies IYSWIM), simply because of my distant past and wanting the best for my DC's, trying to get them the help they need.

Oh - and apparently, according to the school, a writing slope for a severely hypermobile DC is 'stigmatising'. WTactualF?!

Only DS3 is currently under a Paed, though DS2 and DD are under the school Doctor. God knows who will be present, seeing as the Paed DS3 saw last time turned out to be a Locum, and the new Paed hasn't met him yet as I haven't had the appointment date sent out yet.

Oh - and they asked if my Counsellor (attached to Dr surgery, long story, she is a qualified psychotherapist though) was doing a psychological assessment...

I said I doubt it, as we had only had one session so far, and the sessions are only fortnightly due to childcare issues.

They asked if I thought she would be able to provide a report at the end of the process. I replied truthfully that I didn't know.

How can I even be honest with the counsellor about my feelings if SS want a report?

It's meant to be my space to offload stresses.

I HATE this level of intrusion. All because DS1's dad is angry that I contacted SS when his SM hurt him - he told me that we should have 'sorted it out between us', and that I should 'watch myself'.

It's all malicious revenge, when all I was doing was ensuring the safety of DS1 as he's too cowardly to stand up to his partner about the way she has always treated DS1.

The fact that DS1's dad has dropped from having overnight contact 45% of the time, to 4 hours once a fortnight is quite telling - and he doesn't take DS1 back to his house either.

His choice to drop to that level of contact - I have never said he can't have him since this all started, and I have never said he can't take him out for a couple of hours after school either.

Grrrrrrrr.

I don't know what to say - it's so very hard.

The one issue with my Ex having the DC's though is his own SN's.

And being Essex, they were very reticent to agree to letting me record the TAC for personal use for memory issues - though both SW's said they didn't mind, they said it was exceedingly unlikely that all participants would agree, though they would ask.

I pointed out that I have memory issues due to a combo of my seizures & meds for that, and as it is me requesting a 'reasonable adjustment' on the basis of my disability, bearing the Equality Act 2010 in mind, I can't see why anybody would refuse...

I also stated that I was willing to sign a disclaimer that the recording would only be used for personal purposes of a memory aid, and would not be published or distributed. (Have had to say that before, and sign forms to that effect, and am happy to do so.)

Gah!

They kept going on about how they would send me out their minutes, but I know from prior experience that their own minutes are never comprehensive, and I would prefer a direct recording.

I am in Essex...

I bet it will be the Primary HT that refuses, even if everyone else agrees.

I asked if I could take someone along for support, an advocate, and at first they said that as my Ex will be there too, why would I need anyone else.

(Clue is in the word EX...not DS1's dad, granted, but DS2 & DS3's dad, but he's still my Ex for a reason...)

I suggested Parent Partnership - but are there any advocates I can take that are totally independent of the LA??

(And that's if we actually HAVE a PP officer, we've been years without one, and I've not tried since!)