Help to make right choices/demands for DD 3 (LONG 1st post - sorry!)

[messmonster]

My first post so pls excuse length of post and lack of bells n whistles (no emoticons here!) - will get hang of it. Spent last few days lurking, reading loads of past threads and alarming myself with how much I don't know yet. Hoping some of you will help me educate myself.

My DD is 3, has a rare chromosome disorder presenting as GDD with particular delays in S&L. Has no words, although babbling and showing great progress last few months with receptive language. Have started to use PECs and she is now able to make a choice between 2 or 3 symbols to communicate what she wants (food/toys/activities).

We were very lucky to get a Statement for her at 2 (under Stat Assess procedure) and she gets 15 hours support split b/w mainstream nursery and ASD specialist pre-school. (I do appreciate we've been lucky with this and the chromo diagnosis definitely helped (only time I've been pleased she has it).

The areas where I'd appreciate some advice are:

Labelling - Statement describes her as having SLD. She's never had an IQ or other formal intellectual testing so I fail to see how she can be categorised so young. Have challenged but LEA telling me they have to state a primary need for Gov statistical purposes and it's either PLD, SLD, MLD or SpLD. We're at 1st Statement Review and this label is now relevant because I would like to consider a m/stream school for her and I'm assuming most m/stream would reject her with a 'diagnosis' of SLD.

ABA relevant at all? - Been reading the huge ABA thread tonight with great interest. DD has no behavioural/sensory issues but is essentially non-verbal and so wondering if this would still be a valid approach to consider?

M/stream vs SN School - Appreciate this is parental choice (if you're lucky enough to have the choice) but would really welcome insight from any other parents of children with LD and S&L delay. Am totally torn between desire to have her at local village school with DS and in the community vs SN school 15 miles away with specialist provision.

Whew! Done it. Gone from lurker to poster! Hopefully not put everyone off with my long list of queries.

there's a thread here you might want to join in with

as far as labelling goes, that's not entirely true, dd3 currently has cognitive delay as her prime need (although it's being changed) as she's untestable, so there are other options. Challenge again, what do you think her prime need is? Is parent partnership any good where you are, they should be able to come to the review and offer support. I'd also suggest you try one of the helplines ace, ipsea and sossen are a good place to start, their sites are well worth a look round.

can't help with school choice, that's one of those how long is a piece of string questions If you want to go with ms then you need to make sure the statement is very specific and quantified so a school knows exactly what her needs are. Even if the statement says sld, really what they will be looking at is what they have to provide to meet her needs, leas will often push for ms as it's usually the cheaper option. What do you think about the special school, could you see her fitting in there, do they have other children like your dd?

dd3 is non verbal (not asd related) and is in ms with base provision, although moving to ss in september, having little communication has proved hard for her in the ms setting even with good support, but she does have complex needs, each child and school is different.

Just popping in to say I'm reading with interest! - I'm just a step behind you messmonster DS 2.4 GDD is just about to begin statutory assessment so lots of similar questions!!

Hi ninja :)

Thanks Ninja for helpful reply and link to other thread & to 1980 for saying hi!

DD has a brilliant EP and have today arranged a meeting to discuss the 'label' issue and get an assessment to help us guage where DD is (taking into a/c progress over last year) which in turn hopefully will help me get clarity on whether MS or SN primary is the way to go. It's very much a head/heart thing for me and I need to visit the SN school again (having looked at it and rejected it for pre-sch) with primary in mind.

This may make you laugh though (or hold your head in despair). DD was awake for 5 hours last night so my head is scrambled today. Managed to send an email intended for DD's pre-sch re statement review meeting to DS's school (the MS one I'd like for DD) in which I say "based on current Statement no MS school will consider her". Shooting self in foot slightly??? Also probably totally innaccurate and uninformed too but what a get out of jail card for them should they want one!

firstly i would say whatever the dx or label only ever allow your child to go to a school wher the head really wants her.
If you have a positive head who you can have a good realationship with half the battle is won.
A school with the right attitutde is better than any statment in my experience.

I don't beleive the school legally can refuse admission on diagnosis alone as they are not allowed to make blanket exclusions

Would your dd fit their entry criterea normally (catchment, sibling etc) if so her dx is irrelevant UNLESS they can demonstrate that her attendance would be detremental to the education of her and or the other children (i think its worded differently)

When ds started nursery & reception his dx was gdd & CP. He now has a dx of autism, learning diff & CP.
Nothing has changed with regard to his school but the outside agencies that support the school have changed in line with his dx IYKWIM.

He too attneds a ms village primary & it is the right place for him at the moment. He was totally non verbal at nursery & minimal language when he started school but it has been fine & he ahs thrived there & is much more part of our local community for going to school with hisa peers.

I should add that our SN school (ds2 goes to for OT, Physio etc etc) provides MS outreach wwhich has been fantastic.

Thanks Anon for the reassurance on the 'label' issue. Yes DD would fulfill all entry criteria for the MS primary. Have had prelim discussion and had very positive response but school not seen statement yet since I wanted an updated one for them to review. DD would be first statemented child in school for many many years tho so no exp in setting for me (or them) to draw on.

Great to have insight into your exp with a MS village primary with a child with minimal language and your view on the importance of the attitude of school & staff vs statement.

I feel loads better thanks

Hi messmonster. I worked in state education as a teacher for years both in mainstream, special, and on one occasion at a SEN unit attached to a mainstream school. Children in special schools thrived much more in all cases (I worked with SLD/ASD children most of the time). It may depend a lot on the severity of the disability and there may be exceptions, too, but in my experience special schools (=specialist help) are always the best.

Thanks Special. There I was glowing after Anon's posts which appealed straight to my heart and here you go with the other argument that makes total sense to my head!!

Heart says, keep her in the village school with big bro where she'll grow up known by all and possibly treated well by a school that appear to be keen to take real and practical steps to improve their knowledge of SN and to help her.

Head says go where the real expertise is, where she'll be with children with all sorts of SN where she will no doubt achieve and more importantly be seen and (feel herself hopefully) to be achieving.

Think I need to stop thinking about it too deeply for now, wait for the Ed Psych's assessment and get into both schools armed with a ton of Qs.
I think she'd survive and hopefully thrive in a MS setting, just not sure if I'm still in denial about level of her LD.

messmonster, whilst ds2 is happy & thriving at ms primary I am under no illusions that he will need sn school for secondary & the sn school is great too.

but by going to the ms village primary he is now a known quantity in our small community hopefully that will go some way to help him as he grows.

Its also lovely to take them both to school together rather than sending ds2 off on an hours journey in a minibus each day.

I know he will need ss as he gets older & i am more than happy with that too.

Whatever you choose it doesn't have to be forever, don'tfeel like you are under pressure to make a life long decision... one step at a time.... do what you feel is best for her now.

I have to say it is unusual, not unheard of but unusual, to transfer from SS to MS. Most people I know have tended to try MS first, then transfered to SS if it didn't work out. About 30% of my friends' children (with SEN obviously) who started in MS transfered to SS. If you start in SS you can feel really safe and looked after and you are unlikely to want to then try 'scary' MS. Just my opinion.

>messmonster :I think she'd survive and hopefully thrive in a MS setting
I am sorry for "bringing you down" with my opinion, messmonster :( . It is also true that the special school has to be a good one, not just a special school. But I still believe that children with SEN develop better with targeted, specialist help. Also remember that there is a "window of development" for certain skills, and that the plasticity of the brain decreases dramatically around age 9.

As you said yourself it's important that your DC thrives and not just survives. Surviving, imho, is not good enough. In my area there is a special school for moderate learning disabilities, a relative rarity these days. I have seen children with MLD being pushed through mainstream primary and even years 7-9 of secondary - and then coming out of it with horrendous experiences of never being good enough and never being able to excel in anything - and a lot lower literacy and social skills than the children who attended a special school and were taught with specialist methods together with children like themselves, i.e. where everyone had a more or less equal chance to be good at something. And in this case we are only talking about MLD.

In any case I'm sure you will choose what is best for your DC. :)