Here some suggested organisations that offer expert advice on SN.

To refuse referral...conflicted

(5 Posts)
SexDrugsSpringRolls Wed 06-Apr-16 23:08:02

DD has had a million and one assessments, speech, physio, medical, Child Development Team...many more. Started due to a resolved muscle tone problem. Sum total of useless and discharged at 2.5 almost from CDC (language comprehension 12m, non verbal reasoning 48m at 2.5....not an issue waiting?). Just tons of visits and stressful appts, nothing useful. No therapy, doctors all different and it was like talking to a wall. Some of the reports are like a different child, such as the one describing her singing a song when she had 3 words or walking upstairs when she couldn't crawl up them.

We've been much happier since, stress died down and we all adapted. She's come on a lot in many areas. However recently there was a hospital appt, the paed also worked at the CDC and she wanted to refer DD to the social communication clinic and seemed concerned (DD refused to talk, hid under a chair then twirled in circles...not unusual for her out the house)

I've had a call for a home visit, re-referral to CDC again etc. A big part of me doesn't want to engage again with them, it stressed DD, I was stressed, little issues became big things and ultimately nothing happened. I didn't feel I was dealing with a useful service at all.

DD certainly has her ways, sensory differences and social difficulties BUT she is bright and we home educate (tried nursery but didn't go well at all) so socialising is controlled and 90% of difficulties don't arise.

She is starting to toilet train, talks at home freely, is quite well behaved at home and plays with siblings. Outside the house there is slow progress. Less fixated on things or outbursts. Covers her ears sensibly at noises rather then melting down etc.

We're not stressed, she's happy in herself and progressing and my instinct is that we'll jump through hoops and upset probably for the sake of a few leaflets. Or she'll do ok on a tick-sheet (she's obsessive about role play so looks like she plays beautifully if you didn't know she does the same routine constantly, probably presents as having LD and near non-verbal when underneath she's sharp). But then I don't want to do DD a disservice either when there is a difference. People we socialise with freely refer to 'additional needs' and I think presume there's a diagnosis, it's a lovely accepting crowd we know and she's included however she wants to be. In time I see her growing, without school anxieties, and maturing socially later but having good potential to function well.

I was surprised to have a phonecall only 1 week after the hospital appt (expecting a 12 month wait or something). Initially said I'd rather not have her referred, then agreed after a long chat to discuss further face to face. We've after attending so many useless appts we fully accepted and dealt with who she is with no expectation of 'support' but through informal networks and advice. I'm not even sure how they'd assess with no nursery placement...

BackforGood Thu 07-Apr-16 00:26:05

There was quite a long thread on here recently about whether to take the OP's dc for an assessment / diagnosis or not.
Some very thoughtful posts, and a lot of experiences. It might be worth a search. (Sorry, it's dropped off my 'Threads I am on').

It was 99.9% agreement that the right thing to do would be to get the diagnosis though, so it might not be what you want to read.

Ineedmorepatience Thu 07-Apr-16 09:49:44

Many people on here struggle for yrs to get their child's difficulties recognised and yes appointments are a pain but if a "professional" wanted to refer my child because they were concerned I would never turn it down.

What happens if your Dd has a neuro developmental condition such as autism for instance and she wants to go to school later on or college or wants to get a job but she cant cope with the world and she doesnt know why!

Many women with undiagnosed neuro developmental conditions end up with mis diagnosis of depression, bi polar, borderline personality disorder, anorexia!

Not trying to frighten you but that if fact, do some reading.

My Dd has Asd, she is home ed because the system failed her over and over again and she has a diagnosis, those without fare even worse.

Please think very carefully about the long term.

SexDrugsSpringRolls Tue 19-Apr-16 16:43:21

Well...I actually had a home visit from a specialist nurse who was quite decent.

Agreed previous appointments weren't great and acknowledged the reality of a lack of support. She said 'all we can off is a diagnosis', which was in a way refreshing.

Plus they agreed to bypass the usual parenting course and email handouts.

Refreshing blunt in a weird way- 'she has autism' after years of feeling I went down the rabbit hole it was a release. Basically they are saying a quick appt to confirm. Without the hoops, I can see the sense. I was scared of the stress to probably no conclusion yet again.

SexDrugsSpringRolls Tue 19-Apr-16 16:45:36

They didn't seem worried about the fact she's out of education. They said putting all her appointments and reports together it's such a clear picture. For once 'the panel' seem to be ok!

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