Here are some suggested organisations that offer expert advice on special needs.
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Initial assessment at social communication clinic(9 Posts)
Dd, nearly 4, has been offered an appt. a year ago the cdc discharged her for other needs, but a hospital consultant then referred her back to their social com clinic. In the meantime I've removed her from nursery and decided to home school, she was referred on the basis of salt history and behaviour at the epilepsy clinic so they'll be no one but me offering a report. I'm quite nervous... What were others experience? Has anyone HEed and if so how was the reaction. I'm guessing dd will sit mutely without eye contact and not engage at all, she freezes in new places and it's hard to prove she has any language though her vocabulary is good. She just doesn't follow others well at all or take direction. She's quite pleasant now out of nursery! She may hide under chairs or spin if pushed to speak in order to block people out.
We were assessed by a paed and SALT at an SACC. They were fabulous. I went in worrying that I would have to fight for recognition and help. The SALT already knew us and I think that with that info, some school observations and the referral form, they were fairly convinced before we had arrived. I looked up the DSM V criteria and listed out concrete examples of behaviour that illustrated the relevant points. I didn't get my paper out in the session but it was useful to have some extra things in mind for the discussion. You will be fine - Good luck!
Thank you, did they diagnose there? The worst thing about previous CDC visits has been the lack of joining up, eg being surprised to note her hearing aids despite it all being in the same building. SALT rang last week saying they'd discharge before school start ( due to not being seen!) and they were unaware of SCC referral which worried me.
Yes we were told of the diagnosis on the day of the assessment. The paperwork took 5 months tho!
Yes that SALT phone call wouldn't fill me with confidence either. Could you phone up to speak to the SACC administrator for reassurance?
I asked on the phone she said "oh those speech therapist from the SCC will be in touch, I'm linked to a school" l. It's even one dept not linking up, the specialist nurse though who visited to be fair had a while file nd seemed surprised. Dd has seen every dept ot,salt, physio, audiology, epilepsy team, pead
Oh gee, it doesnt fill you with confidence does it!
If you want them to observe her in a more relaxed environment could you video her or ask them for home visit!
Sometimes Proffs would like to see chidren in their home but they feel like they are invading your privacy! We have had OT and EP's in our home!
A specialist nurse visited, dd hid a while then got stuck in a drawer lol
Glad you got a visit - are they sounding more joined up?
I don't know, they vary hugely. When she was younger I refused a child development assessment (duplicating from neighbouring borough) and the SEN panel decided to still offer the appt. they said the paediatrician felt it was important she had to be seen, I couldn't cancel and they'd be 'concerned' if I didn't go.
When I went they seemed to have already decided she was fine and actually dismissed a GOSH diagnosis.
I feel quite wary of them since, they have been so erratic across depts. sometimes dismissing her needs, then the next time being horrified I'm not meeting her needs. For example audiology agreeing her aids could be out then a snarky comment from paed that she wasn't wearing them when seen. One physio would diagnose low tone, then the next high time (actually mild hemiplegia, they would unbelievably tend to check one limb).