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Being blocked from a diagnosis?!

(36 Posts)
fc6362 Wed 11-May-16 18:15:39

Hi, I think I've posted a similar thread before so my apologies. I was trying to figure out what all the issues are that I'm struggling with with my fc.
Now, after writing out all the issues and crods referencing with the nhs symptoms pages I'm 90% sure they're down to learning disabilities. On top of that we have daytime soiling and wetting issues.
My fsw and the csw are quite happy to talk about the wetting and soiling but no matter what I say to them they just do not want to help me proceed with getting a diagnosis of anything mentally! I feel like I'm going insane, banging my head against a wall repeatedly! confused
Has anybody else experienced this constant "blocking" from the social workers? Does anybody know why they're doing this?

heavenlypink Wed 11-May-16 18:31:33

Totally unacceptable if this is the case but .....

could it be as you are fostering the children (and if) they are not going to be with you long term, the fostering team are concerned about 'attaching labels' and putting other potential parents/carers off.

Lightbulbon Wed 11-May-16 18:35:43

Have they discussed an attachment disorder or post trauma as the cause of problems?

fc6362 Wed 11-May-16 19:24:00

Lightbulbon Yes, they've tried to tell me it's disorganised attachment. Now don't get me wrong, there are some real attachment problems there, however apparently these can actually be diagnosed too, but they're just giving me it as "that's what it is, now don't ask any more". Some of the things though do not come across as attachment problems.
Heavenlypink the children (she has 2 siblings) have been with us coming up to 2 years and the plan right from the off, and still now, is for them to stay with us long term. There's no possibility of return to home and as far as we were concerned, no possibility of them moving on from us, however I'm getting so frustrated with these issues and lack of any real support that I'm starting to doubt my abilities

Twopots Wed 11-May-16 20:13:16

Can't you just take them to the GP and see if you can get a referral for assessments? How are they stopping you? What has the health visitor said??

fc6362 Wed 11-May-16 20:48:24

I was trying to go through fostering as they obviously have resources. I asked the GP for a referral to camhs and also asked about genome testing. He wasn't aware that that testing is now available on the nhs. I also was there to ask for a diagnosis of constipation do that I could get her referred to the enuresis nurse.
He chose to focus on the easiest one and said we'll discuss the cahms issue next time and he's going to do some research on the genomes project.
I got in touch with the hv around a month ago who said (I almost cried with happiness) that she also had always thought there was "something more" with her.
I've got a referral to the paediatrician next week finally so hopefully that might get me somewhere.
I just really hoped fostering would be more helpful with all their resources etc as I know a referral to camhs through the GP can take years. I don't really know who else to ask for a referral to?

fc6362 Wed 11-May-16 20:50:35

Fostering are stopping me by not giving me access to any of their resources and constantly "objection handling" the issues I've raised

fc6362 Wed 11-May-16 20:52:39

I should point out that we had been approved as Foster carers for 2 months before we got these children so I'm learning as I go

MadauntofA Wed 11-May-16 21:01:13

The paediatrician can certainly look at the learning difficulties and do the General tests including genetics if the child is definitely delayed. If the child has a health visitor, then must be preschool so developmental delay rather than learning difficulties. The paediatrician can refer fir appropriate help ( speech therapy/ physiotherapy etc.) I would be extremely wary of giving an "attachment" diagnosis to a child that young and would be looking at other things. The paediatrician will be in a much better position than the GP to arrange the appropriate tests. Has the child not had health assessments with their development being assessed?

MadauntofA Wed 11-May-16 21:04:09

Are pre- birth drugs/ alcohol an issue as these can often present with delayed development/ behaviour problems etc?

MadauntofA Wed 11-May-16 21:06:21

I'm not quite sure what you mean by fostering resources? The children are looked after, and these are health issues, so the health looked after team are the ones you need to be asking for. The paediatrician should be much more help than the fostering team for referrals. Having said that, your social worker should have been more helpful in directing you to the right place!

Cassimin Wed 11-May-16 21:14:25

Have a look at sensory processing difficulties. Think it is becoming more recognised with professionals now.
In our case SW was reluctant for us to push things with our LO as they wanted to place them for adoption.
This was quickly ruled out when we were passed to adoption team.
Plan was then changed to long term with us. When this was finalised SW was on board for diagnosis.
Our first port of call was community pead. This got the ball rolling then opened the door to other professionals.
I would do lots of research yourself and join relevant support groups as the training supplied for foster carers dealing with challenging behaviours etc. don't apply to children with disabilities.

tethersend Wed 11-May-16 21:20:10

How old are the children? If they're at school, have you raised your concerns at the PEP meeting?

Twopots Wed 11-May-16 21:21:47

I would get the GP to make the referrals, wait a couple of weeks and then ring up cahms etc and point out how the child is in LAC care and appointment is needed ASAP! In our la LAC children get put to the top of the list, also those who mither the most get seen sooner, good lucksmile

fasparent Wed 11-May-16 21:36:23

Seems rather strange. Social Services will be aware or should be of what can be achieved through early interventions and support.
Part of fostering standard's , deals wilth legal issues . Do not know the age of the children, one legal issue is Medical Competence right for children under 16 too access treatments in there own rights. Is "Gillick Competence" can google
for details.
Can also access your Local schools statutory disability assessment team, community paediatricial, disability outreach team. there are lots of area's where you can access support.
Know you should not have too do any of this would explain your problems and conserns too IRO at next LAC Review.
Good luck

fc6362 Thu 12-May-16 07:00:07

MadauntofA she's 6 1/2, going into year 2 in September. Already managed to get her referred to speech therapy by pushing it myself as the school didn't think it was necessary. She's only had one session to assess get but they had enough concerns to want to see her in school, just waiting for that to happen. I don't believe she's had her development assessed, no.
They're saying no alcohol/drugs during pregnancy because she wasn't dependant, however logic suggests there will have been alcohol.
Cassimin I'll have a look at spd, I have joined groups like therapeutic parenting, attachment disorder etc but a lot of those children do not sound like her. To me it isn't so much behavioural as just general mental health problems like memory etc.
Tethersend they're 6, 9, 10. It's 6yo with the problems. Well, the major problems. I've raised in the pep and been told they'll ask the teacher to watch out for these issues but that's as far as it's gone.
Twopots I will try that, I was just waiting for sw to refer to camhs but given up on that!
Fasparent, thank you, that's helpful to know! I think the problem is that they've decided it's attachment disorder and they're not willing to budge. They don't see the issues but how would they when they see her for an hour every few months at the most!

fc6362 Thu 12-May-16 07:10:57

Just read about spd and I could tick around 60% on that checklist! Some of them I am going to try and get school to agree with as they have actually mentioned before that she prefers to go play by herself on the playground and is easily distracted, plus finds it difficult to follow instructions. Hmm, this has given me another line of enquiry...

MadauntofA Thu 12-May-16 11:06:47

Well it sounds like she has a good advocate in you! The Paediatrician is definitely the best starting point as long as they are a community/ developmental paediatrician. If not, ask them to refer you to one. If it is not behaviour, then CAMHS aren't likely to be much use. Write everything down for the appointment. There is a good form - the BAAF carers report which is a good start, Google or ask your social worker. Also look at foetal alcohol spectrum.

OddBoots Thu 12-May-16 11:17:28

If she is likely to have been exposed to alcohol during pregnancy does she have any of the physical signs of foetal alcohol syndrome?

Threesocksnohairbrush Thu 12-May-16 11:32:54

I'm an adoptive parent not a foster carer but I would say keep pushing. I have had/ am having a similar experience with one of mine. It feels as if people spent decades failing to understand the ways in which complex trauma/ abuse / neglect could affect a child's long term development, or the importance of early attachment. That's changed massively, thank goodness. But it now makes me wonder if we have almost done too good a job, in that if a child is adopted or fostered everything is attributed, often rather vaguely, to 'attachment'. Whereas most of our children, in my view, are complex little mixtures who certainly have attachment issues to varying degrees but are also at high risk for developmental problems, drug and alcohol effects, inherited learning disabilities and mental health issues ... you need to work out what the mixture is for your DD and that may very well need the involvement of other professionals. I'd start with a paediatric referral and/or CAMHS.

Is there anything you're aware of with birth parents that could be an inherited issue, even if just a cery chaotic life - there's a perfectly sensible theory that in some families the inability to cope or parent effectively down the generations is about undiagnosed and potentially heritable developmental or learning issues.

Do you have any access to the Adoption Support Fund as a long term carer? They can do very comprehensive therapeutic assessments which might disentangle attachment from the other stuff. If it is all down to attachment, what specialist help are you getting? A 6 year old with disorganised attachment would be very challenging and need specialist help.

A useful question to ask can be 'What would you be considering as a diagnosis if this child wasn't adopted/LAC?'

You could also talk to the school about applying for an Education, Health and Care Plan if she is really struggling in school.

Do push for the referral to enuresis nurse if she is struggling in that department, they are very good generally.

Best of luck.

fc6362 Thu 12-May-16 19:15:50

MadauntofA I've suggested foetal alcohol syndrome but again they're having none of that. I will have a look for that form. I've written a page and a half "report" out to take with me.
Oddboots no, no physical signs unfortunately but from what I believe in the UK they won't diagnose fas without mum admitting to drinking.
Threesocksnohairbrush I could have written that myself! I'm sick of everything being put down to attachment. They suspect mum has learning difficulties but not confirmed. I like that question!
No specialist help. They're willing to offer "help" with soiling and wetting (which don't actually help at all) but not with anything else. She's seeing the enuresis nurse next month. Her 10yo sister has been with the nude for 14 months however with no change and she only wets the bed every night.

Kitsandkids Sat 14-May-16 11:39:20

My 8 year old has some issues and if I had to 'label' him I would say he has mild ASD. When he is settled he can manage quite well, but in new situations he can end up having crying tantrums, running away, hiding under tables etc. Not with me, but when he starts a new year at school etc. He is also at least a year behind all subjects at school and has problems with memory and recall. For example, he's still not totally sure on the names of the children in his class and we're now nearing the end of the school year. He is easily distracted, can't always understand what people mean and will sometimes assume they're being horrible when they're not, will do things like sit down on someone's painting because he hasn't registered it's there even though it's in plain sight. His speech is understandable though he doesn't always pronounce every word correctly and often misses off beginnings of longer words. So forgot becomes got and defeat becomes feat. I've had his hearing checked twice because he rarely hears somebody the first time and is always asking them to repeat what they said - though I think this is actually because he doesn't understand it the first time. He is very 'quirky' and finds it hard to understand others' points of view. So he would happily sing/hum/make random noises all day long but if his brother started to sing he would straight away complain that it was annoying.

An Educational Psychologist has seen him at school and thinks he has Attachment Disorder. My view is that he might do, but there is something else going on as well. What has Attachment got to do with thinking your teacher said the biscuit you made at school would change colour, even though she never said any such thing?!

The sw is quite supportive and has suggested raising it again at the next medical, which is coming up soon and asking for him to be referred for more assessments. I don't particularly want him labelled but at the same time, as other children are growing up and growing out of little habits he is looking increasingly 'odd' and I would like people to know the reason why if there is a medical issue.

On a side note, do you get any extra money for the soiling/wetting? We don't really have that issue (though he did initially wet the bed quite often but just seemed to grow out of it) but I know of foster carers who have received a substantial extra payment each week for a child with a wetting/soiling problem.

fasparent Sat 14-May-16 12:35:48

Be carefull with Foetal Alcohol and FASD, this is an unberella term resulting in many many conditions, reason why lot's say this fit's the childs problem, one of the criteria too FAS FASD assesment is that child 1st is seen at Genetic Clinic too
perhaps rule out this, as can be masked by other conditions not related too FAS or FASD, also because of development delays in some children an assessment at a FAS ,FASD Clinic is unlikly untill the child is around age 7yrs, unless a child is born with full FAS , as in our childrens situation.

fc6362 Sat 14-May-16 14:42:09

Oh my gosh kitsandkids he sounds just like her. She nearly had me running round looking for a costume the other day for a play that wasn't happening because she swore the teacher had told her she needed a costume. It was only because I asked the teacher that I found out she doesn't need a costume and the play wasn't for weeks.
Fasparent I didn't know we had those tips of clinics. From what I've read they won't diagnose fasd unless mum admits to drinking?

fasparent Sat 14-May-16 15:26:23

1st FAS child wieghed in at 1lb 12oz with multiple issues, survived and is now doing well, doing a follow up now with genetics as an adult due too advancement's in Gemno's technoligy .
2nd diagnosed due too histolic lifestyles, both at Genetic clinic, no concent was required ss had legal rights.
BOTH ARE now fine mainly due too early diagnosis and very early interventions
would have been satisfied with any diagnosis, enables support and understanding too be put in place.
Their conditions has never been an issue, just had fun and got on with things best they could. Both are independant adult's in employment have their own houses, drive etc. Still have FAS a lifetime condition but can contol things and live with it.

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