microcephaly

[hodnet2000]

hi everyone, im new to this site so still finding my way around . is there anyone who has a child with microcephaly who can give me tips on what help i should expect.we are the legal guardians of our granddaughter aged 3.she has speech delay and has speech therapy, its the aggressive behaviour we find difficult to handle.my HV is not very helpful ,im sure there is more help available !!! My HV has obviousley never had a big rock hurled at her head or she might be more helpful!!! thanks

Hello and welcome to Mumsnet. I don't have any information on microcephaly, I think there may be posters who can advise a little on that and on the behaviour.

In terms of speech problems:-

you may find this link useful:- (from the NAS website and geared towards autism but useful I think for speech delay as well that's not to do with autism)

www.nas.org.uk/nas/jsp/polopoly.jsp?d=1070&a=5319

hi total chaos,, thanks for the reply,i know a fair bit about the condition itself,its a bit like other conditions in that there is such a big range of symptons and behaviours ranging from mild to severe.my gd has a small head measurement. her development is delayed ie speech, behaviour,etc.she is 3 but is developing at about 2 to 2.5 yrs.i just dont know what help she should be getting [she has salp at the moment].a lot of her behaviour is similar to a child with autism,,, but the "experts" just seem to ignore me, thanks

Do you have Portage? They are an excellent source of help - both for the development of the child and the sanity of the carer. You can refer yourself to Portage, it is a form of play/learning for children with SN.

TBH my HV is sympathetic, but thats about it! Find our from your HV if there is an Area SENCO (special educational needs co-ordinator) who will help you - ours is based with LEA - she visits at home and help us get a place at a SN nursery, is applying for funding for a 1to1 (not statementing) for a ms nursery. Also your gd should be starting the statementing process at 3.5.

Do you know about Disability Living Allowance (DLA)? If your gd has sn she may qualify for this benefit, much form filling in though!

There is a huge amount of collective knowledge on this site, so welcome and I hope you get some good help.

hi, what is Portage? my HV is not at all helpful, asked her for help and she just told me that GD is getting all the help she needs!!! she isnt around when GD is kicking biting, pinching,scratching and screaming at Me !!!!!!its like as if my HV cant be bothered to get me any information or more possible help, until i have it on paper that GD is officially SN what hope have i got. all i have is the consultants report of her visit that records she has Microcephaly. GD has SALP at the moment

Have you tried to get help via your GP?

hi i think i will need to try one of the gps in the practise,[there are 3] just how SN does a child have to be to get help from Portage?

You should be able to self refer to portage. Do give it a go. You could also look into accessing behavioural support. often there are 2 teams: one for children with autism, one for children with general behaviour issues. i'd ask about both. They can be very good. You could also ask about the possibility of attneding an NAS EarlyBird scheme. Officially you need to have a pre-schooler with an autism diagnosis to attend, but it would be worth asking. It takes place over 6 weeks iirc, and is really helpful in terms of strategies. If they have a space they may well let you attend without an ASD diagnosis- no harm asking anyway. Does your GD get seen at a CDC- they should be able to point you in the right direction for these sorts of things.

hi gd was seen briefly at our local cdc department of the hospital,and we were told to see them again in may08, no mention of how we cope with the problems chloe has , her behaviour almost borders on ADD or AUTISM, but im no expert [the "experts make sure that i know that"] but i can sense enough to know i am being fobbed off, i am going to try and get her preschool to help when they go back in september.

Google Portage and find details for your area, should have phones no.s etc just give them a call.

In some areas they don't have it eg Sussex have Early Years Service but they do the same job - don't know how you would contact them though.