Please, how do I prove I am not jsut being paranoid?

[KellyKrueger1978]

I know ds has problems. I have four children and he is totally unique. I love him to bits, but he is different to the others I am certain he is autistic. It is strongly suspected by his paed even, but they are unwilling to diagnose. Nobody seems to see the behaviour we exeperience at home and so we are really struggling for a dx. He is high functioning but I am not happy for him to struggle as NT where he is clearly not. At the moment his pre-school is describing him as a 'bit slow' which is infuriating me, as he is actually showing as intelligent when he is communicated to on a level that he understands. He doesn'teven always understand basic english, but everything had to be rephrased in a way he understands and nobody gets that. His pre-school puts in 1-1 care on the basis that 'he settles better' without questioning why.I feel really frustrated abnd I am secretly hoping he will struggle a bit at school proper in Jan so that they recognise his probs and offer him support and a dx.

He isn;t severely effected by his diabilities, nothing like what some of the mothers have to work with every day on here, but is it so much that I want him to achieve what I feel he can achieve? I feel so sad at seeing him struggling when I knwo there is a bright little boy trying to get out and I don't know how to help him achieve that.

KK

Was wondering if you have spoken with the National Autistic Society - they may be able to offer you help and advice in this regard.

Preschool have given your DS one to one from their own funding - this will not be forthcoming in school unless there is a document called a Statement of Special Needs in place. If school does anything they will doubtless place him on School Action Plus which may not meet his needs either in the longer term (he will certainly not get any one to one attention in class). Have the preschool had anyone in an official capacity e.g an ed pysch to observe him?. School won't help in diagnosing and you may well have to fight for support - the onus with regards to diagnosing is on the developmental paed.

Are IEP's (individual education plans) being done?. If so what do these say?.

Has anyone talked to you about applying for a Statement for your son?. I would seriously look into applying for such a document now even though you do not have a diagnosis. IPSEA are very good in this regard and there are model letters you can use. Their web address is www.ipsea.org.uk.

I will try the national autisitc society, tahnk you.

He has been through quite a bit of asessment - 10 hours plus, and we are still waitng for a physio assessment and more tests such as an eeg. The assessment has shown delays and austic tendancies and they have witnessed him having possible epileptic fits but they won't dx him still. They told me to come back in 6 months, and then a few weeks ago told me to wait another 6 months. The area senco has been made aware of him but I have been told that I can do nothing more until he starts school and they see how he does.

What prompted this post is that I am sick of being told that I am being paranoid. The headteacher at the school has seen him have a possible fit - he fell off a bench out of the blue, badly bumping his head. He then had a meltdown but she jsut wandered off. Her attitude is taht lots of little boys are like this and he will be fine once he is in school. Then yesterday I got my sw telling me that I am being paranoid. It is really getting me down.

he is 4. I really can't afford to go private though I think I might have to start saving. I would like to take him to BIBIC, but I'm not in a position to be able to do that at the moment neither.

They don't have to just wait until he starts school and see how he copes there. Ds2 has no statement but the area SENCO is already discussing his transition to school next year and looking at what help he might need.

grr at you being told you're paranoid, Kelly. That's rubbish. Has there been any news on the fragile x tests? Does he get any extra support at nursery? Is there a special needs early intervention person who can advise the pre-school on his extra needs at all?

the big problem is that they are giving him 1:1 at nursery because he 'settles better'. Then they report that he is doing well and is jsut a 'bit slow'. I hate that, he isn't slow at all, he is very intelligent in some areas. Besides that though, once he isn't getting 1:1 he is goign to really struggle and fall behind, which doesn't seem fair when I know he can keep up given the support. But while they are not recognising that he does have problems, I am hitting brick walls in terms of getting support for him when he starts reception at a new school.

I don't really fully understand the fragile x tests. His report said that the intial results have come back normal, but they are still awaiting a full chromosomal analysis, not sure what that means.

Somebody on here told me about bibic and they will do a free assessment for those in hardship, though they can';t diagnose. But I would have to take him there so would need to arrange childcare for my other three.

I haven't used BIBIC myself but I think they can also give some help over the telephone. Peachy will know more than me though.