meeting at R,s nursery

[JenRose]

At the last meeting the SENCO and HV and key worker were all talking about her needing a statement.

Now since the last meeting she has really come on, BUT she,s still behind in her development and they sort of glossed over the results of the CDC asessment.

The Specialist HV did her own asessment of R and she said that R,s language skills are very good and the SENCO even suggested that the language asessments done on R in the CDC are to blame .

 

They said that because she shows imagination-ironing on a play ironing board that they are confused as to why the cDC say ASD traits, we say thats not imagination thats her imitating other children.

 

They want us to send her in with no nappies and see if her weeing in her underwear will make her want to go on the potty/toilet.

 

I am not happy about this at all, she doesnt know when she,s emptying her bladder/bowels OR when her nappy needs changing because as well has having suspected ASD she has Hemiplegia but they said they want to try it.

 

I want her to go to a primary school with an ASD/language unit attached to it and as she starts in September 2008 i know we will have to start the asessment/statementing process but im thinking now that the nursery/SENCO dont think she needs it and im very disappointed,letdown by them.

 

Her dx from the CDC asessement reads: lack of pretend play skills,left-sided weakness,echolalic and delayed language skills and minimal social reciprocity. This could suggest a diagnosis of ASD however further Asessments and observation will be needed to clarify diagnosis.

We see the Developmental Paed on Tuesday and i dont know what to ask her as this meeting has really thrown me off balance, i get a really uneasy feeling about the HV/SENCO as they were very sceptic about the CDC dx, and its like they are working against what the CDC are saying, or maybe im being paranoid but i dont think so.

[loulou]

Hi,

 

Sorry to hear you had a bad time <'> .

 

The CDC are the experts in diagnosing, the HV and SENCO are not . I would advise you to write down everything they said/observed and take it with you when you see the Paed on Thursday.

 

All the best, Loulou xx

[JenRose]

thanks loulou.

 

I just dont understand why they are glossing over what the CDC has said, i felt like i was a naughty child being told what to do, that i didnt know my own child and its bothered me all weekend.

 

Im just hoping that this Paed will understand what we tell her about R and her problems.

[loulou]

Hi,

 

<'> It's awful when people say things like this isn't it? I don't think they realise how upsetting it is. My Social Worker said some silly things to me, like "I'm suprised you didn't realise there was something wrong with your child when he was much younger" .

 

I'm sure you'll have better luck with the Paed, does he/she have a copy of the CDC report? If you're not sure, take a copy with you.

 

Loulou xx

[elun1]

Hi JenRose

CDC are far better placed to make judgements that HV and SENCO. Also YOU know your daughter better than any professional and you are still concerned. Hopefully Paed will pay close attention to the CDCand your feelings and make their own judgement. My HV was well meaning but without anything really helpful to say with regard to my ds when he was smaller. She thought I was depressed when I kept saying there was something wrong with him. Some SENCO's are clued up but not that many have a lot of knowledge about ASD's.

Take care <'> Elun

[big mamma]

JenRose,

 

Re the nappies issue. Your daughter may well not have the same sense of pressure in the bladder that other kids have when they need to wee. I know of a little girl who is totally oblivious to the sensation of weeing even when she is doing it - its only when the puddle emerges that she is aware then seems very shocked that it has come from her. I would also run this issue past your CDC as they may not agree with the Nursery approach. I f you do not feel comfortable with it then do not agree with it.

[pumpkinpie]

I think that par of the problem is that leas are really pushing schools and nurseries to not statement children. This is meaning kids are not geting help until later and until they are in distress .

I would go with your instincts afterall it is you and your familiy who are the constants in your childs life and you who will be the ones to pick up the pieces when their advice is found to be wrong!!!!!!!!!

 

I would definetley go with cdcs diagnosis, it is the one you know in your heart is correct. I would not pussy foot around it to the developmental paed I would tell them you arent happy and this is what the nursery is saying and ask him/her to speak to nursery etc as you feel (with some justification) the nursery has its own agenda and opinion of your child.

I would try and get the paeds backing for you plan of where you want to send her next year and look at applying for a stat assessment now - dont wait for nursery to do the paprer work as this means the lea is not tied to a firm timetable.

 

When little p was at nursery I let it slide as I trusted the nursery and salt - when she left the head told me her language was much poorer than she had expected and confirmed all the things I had said the year before - but had been made to feel I was being over anxious.

 

Go with your instincts and tell them straight !

[JenRose]

i got out the SOGS report tonight that i was handed on Friday, i was so peed off with what they were saying that i ignored it but they have her speech,language,locomotive,self care/social all at a years behind but when it comes to social/interaction bang on age appropriate.

 

Hmmm thats very convinient in my opinion, as they are not having it that she shows problems in this area.

 

I want to tell the paed what they are doing but am scared of backlash, am just a bit unsure cos of what happened with M where CAMHS sided with LEA, but this Paed is under a different LEA than the one that we are under for education, cos we are on the boundary we are allowed to use either hospital so im sure that the Paed will not be worrying about budgets etc, BUT the SENCO and HV are trying to pressure me into transferring R onto the NHS that comes under the same district as our LEA and i dont want to.

[JsMum]

With the way you are feeling about the HV and the SENCO could you not write a letter of complaint to your areas council and also see your MP about your findings of the possible implications to LEA if they try and suggest that your daughter hasnt got ASD (dont forget, HV and SENCOs are not qualified to diagnose, so there for shouldnt be passing judgement here,)but that you are very concerned that if your daughter doesnt recieve the correct diagnosis she wont get the support she needs in all areas of her development.

 

lets suppose she does have ASD but with this kind of process to accessing the diagnosis then this could be jepadised because of the opinions of a HV and a SENCO.

 

I would be very inclinded to ask for a second opinion on the assessments that she had done as they are contridicting the CDC and that could be why its looking like the HV/SENCO are trying to describe a much more able child than actually presant.

 

PALS could provide more information on the complaints process and there is also NAS as well it does seem that their is defenate contridictions here and maybe a full time assessments centre would be a more suitable arrangement here in a Autisim specialist centre.

 

PARIS have a database of the assessment nurseries so it could be you could try and see if this could be one way to stop the contridictions and nip in the bud those Councils and LEAs that want to save cash on specail needs that they are insisting just isnt presant when other proffesionals and parents say is.

 

the nappy issue is also a parental choice, if you dont think its viable then dont do it,

this is a very personal issue and they shouldnt be getting invovled in this way, suggestions and recommendations well come from HVs but taking over and telling parents what to do, thats a big No No.

 

 

JsMum

Edited February 5, 2007 by JsMum

[JenRose]

Thanks jsmum.

Im going to ask M,s psychologist to asess R in nursery.

He just specialises in developmental disorders, he dx,d M and helped us fight the NHS to finally get a dx for M last year.

 

He has already told me from his observations of R at home that she has Semantic Pragmagtic and HFA.

 

I have been confused with the way they have handle R, with M it was the dirty tricks/lies that the LEA pulled, that got them nowhere cos we got a statement and with R it seems the softly softly approach is the one they are taking, its just too coincidental that everything we have been saying about R, they have agreed on and now we suddenly start mentioning statements and they change their tune drastically.

 

Well, im not one to be put off as they shall see!!!!!

 

Im going to request a statutory asessment as soon as our psych has observed R in nursery.

[elun1]

Good for you Jenrose

You know your child best

Elun xxx

[JenRose]

Went to CDC, did see the Paediatrician today but one of her Doctors.

I showed her the SOGS that the SENCO/HV did and she just said "Well, im not sure what to say about that, its nothing like we have observed R to be like, i cant really tell you what to do with that, i do have a suggestion but uts not up to me!!!!"

 

I mentioned about the nappy training and she looked horrified, she,s going to get their Special Needs HV to phone me and have a discussion and she said if Nursery are still saying that they want us to do this then SHE will phone them.

 

She said she doesnt understand why an asessment by SALT that was carried out in Nov has not been sent to us or them, (hmm i do, i think they are holding back reports to stop is from applying for a statement) and she,s writing to the SALT to suggest that we all work together to do whats best for R.

 

I told her that i keep getting pressured into changeing NHS to the other hospital but that i dont want to, and she said no and neither should you, she,s YOUR daughter and its up to you.

 

I told her that we are going to start the statementing process off and she said they will provide a report for R.

 

So i feel a lot better now.

Im going to write to the LEA this week and request a statutory asessment,but im going over the SENCO/HV as they are not being very helpful at all.

[butterfingersbimbo]

good on you chic! dont let them bully you into backing down!!! <'>