helpppp!!!!!

[ibiza1]

i am so frustrated at the minute my daughter is starting therapy in april for 8 weeks twice a week but still they refuse to give a diagnosis and i feel like i am fighting to get my daughter into special needs, the ed pschologist isstill to come out to the nursery and access her, over weekend we had awful time she gets very sensitive over the cold, and freaks if we take her coat or shoes off i am adamant that it is autism/ashbergers any advice, the main concern is she does not play with other children at all full stop, she licks people? and is very conscious of her hands being dirty every few minutes mum my hands.
any advice???? please !!!

Hello ibiza, sorry you are frustrated with things. Just some thoughts...

How old is your dd and who is she about to have therapy with? She must be talking to you as you say she says 'Mum my hands' but does she communicate with other adults even if she doesn't play with children? Some children aren't very sociable with other children and relate better to adults. Most children have their sticking points; just because she doesn't like the cold doesn't mean she is autistic. However, I am sure you know her so well and you will have feeling as to whether she may need special help.

Has she been assessed by the local authority special needs people and have they put an individual education plan (iep)in place? Have they suggested that they do a full assessment at your hospital which would look at her as a whole ie.general health, development, educational and social issues.

What do the staff at nursery think? Does she settle there? If they are concerned you may be able to get them to push things along to see the ed psych. Once she is old enough for you to choose a school you need to tell the school about your worries as they will be keen to put in place extra help if she is likely to need it or, if she needs a specialist school, to make sure she goes to one!

Hi Ibiza,

Struwellpeter wrote:-

"Once she is old enough for you to choose a school you need to tell the school about your worries as they will be keen to put in place extra help if she is likely to need it or, if she needs a specialist school, to make sure she goes to one!".

If only this were actually the case....some schools are pretty much next to useless when it comes to dealing with such issues. I also smiled wryly at the word "keen" with reference to schools. They will not necessarily ensure either that she will go to a specialist school if needed. It is primarily down to you as her parents to get the help she needs. There are so many instances where children have found school life really difficult due to lack of proper support from schools. Many children can be left languishing on IEPs that are simply not meeting their needs.

If this child needs specialist support at school in the form of a Statement (and she will need a Statement to go to a special school) this needs to be applied for now. You as her Mum can apply for such a document from the LEA, you need to write to them asap. You do not need nursery's permission to do this, just apply for it.
IPSEA's website have model letters you can use - www.ipsea.org.uk.

I would ask the nursery to phone the EP to ascertain a date for a visit. If they can give you the phone number then I would suggest you call them.

Is your daughter under the care of a developmental paediatrician?. If not she ought to be seeing such a person on a regular basis, your GP can refer her.

If you think she is on the autistic spectrum or has Aspergers you must go all out to receive an official diagnosis. You are your child's best - and only - advocate.

my daughter is 4 her current mainstream nursery who were excellent brought the concerns to our attention, she is starting therapy with occupational health and speech therapy, and she is going for blood tests in may to rule out flex x syndrome?
up to now we have had answers but under no curcumstance am i placing her into mainstream primary!
the nursery has said she will need specialist teaching and the paedatrician has siad she would benefit it from it, but the ed psychologist has still not came out to get the statment in place, however her nursery has said that we will have to fight for it, but in the end its our decision she can not be placed in mainstream if we dont want her to be, their our lots of other traits she likes adult attention not kids, plays on her own, licks things, pokes at herself, faciated on certain toys, makes a noise when concentrating, i am past trying to convince carers, the pead has said she is not at the right developmental stage for her age, and thats he would suffer in mianstream.

getting her into nursery is a nitemare she will kick and scream to the point she will end up huting someone, the teachers hav to end of lifting her and then she settles but does not play with anyone else its like she is always in her own wee world.

Hi ibiza,

Is she going to be tested for Fragile X?.

Glad to see that she will receive OT and speech therapy but all these provisions can be patchy; she may not receive regular sessions of either.

The EP makes recommendations to the nursery re extra support but these people work for the LEA. Many LEA's are under pressure not to issue statements so do not be surprised if this person turns around and says "no" to a statement. This is why I suggest you as her Mum apply for it yourself NOW.

She will also likely not be able to access a special school without a Statement. You primarily need such a document in place for her educational needs. I think too she would suffer awfully in mainstream given her difficulties you describe.

You need to work hard to get that statement. It is your decision not to put her in a mainstream, but the decision to let her have a place in a specialist school lies with other people- so you need to get these people on your side ASAP. Sounds like she really needs extra help.

hi yes sorry its fragile x, keep getting into my head cus the paed said that she is way more flexible than normal, the ot and speech therapy our scheduled for twice a week for 8 weeks to see how she goes this starts on the 7th april.
we have sent a report myslef and the school back to the educational board and the peadatrician that is dealing with it stated that we r going down the formal route which usually the only way to go is special needs or classroom assitant in with her in mainstream, which i dont want but if it is that or nothing well?
now the school r waiting on the ed psychologist to come out and make the next step happen, i have also written a long letter to this ed psychologist with all my concerns etc, she is due back at nursery next tuesday after easter so i am hoping i will know more by the end of next week.
we r also going to turkey which was booked way before any of this happened well we always had concerns but more that she was shy, i am very concerned how she is going to recat as she hates loud noises and can react badly, i am sick of people staring it cracks me up, i really appreciate everyones advice, its so helpful can any one suggest holiday tips?

i am sorry my typing is awful guys!