IEP help please

[claw3]

Ds has come home with an IEP in his book bag today!

It says present at this review (this is his 1st IEP) SENCO and his class teacher from last year.

Im a bit surprised as i knew nothing about this and hadnt been consulted and the IEP basically reflects the schools lack of understanding of ds.

Should he have been evaluated?
What is it based on?

Any advice appreciated, thanks.

Sorry if this is a hi-jack.

WetAugust - the problem is I am not an expert on all issues as a parent. My child is still undergoing assessment. I don't know for definite what his limitations are. I don't necessarily know what to get 'tough' about. From what I hear, even if you request assessment for a statement, EPs are so governed by targets etc, their judgments are questionable. So what do you fight back with when your child's limitations have not been formally defined.

For example, my son has hypotonia/hyperomobility/some coordination problems. I don't know how he should be supported because he has not been assessed by OT. I don't necessarily know all the ways in which this will affect him. I cannot demand that he should be supported in a particular way because I myself do not know the best way to support him.

School would say the same at the moment. I can shout at them but they are not OTs.

If the OT suggests doing certain things and they don't, then they are not meeting his needs.

At present, for me, I don't feel confident enough to define them in every area so I'm not going to piss the school off just yet.

Not suggesting you 'piss off' school. Working with them is obviously better.

When my son was dx ASD it was clear that the school didn't have a clue on how to deal with him. You;re right, EPs are not independant and so their advice is questionable. Any EP advice has to be treated with scepticism as they are in the employ of the LEA and they do not want to land their employers with hefty bills for specialist support.

But tbh I don't see why support can only be delivered once he's been assessed by an OT. Support can start immediately a problem is identified to treat the situation that currently exists - worry about the OT's prognosis later.

Surely if you gogled his conditions (as I did when my son was initially dx'd) you'd see the sort of pyhiscal aids and eductaional interventions that are appropraite to his condition in general - albeit not to him specifically, but t oouwld be a start.

I'm not 'having a go' Debs - I've just seen to many instances of 'drift' where parents are kept dangling by school / LEA / EP/ CAMHS / Paeds / OT etc when a start could be made by some initial common sense strategies.

Best wishes

I found this book www.amazon.com/Parenting-Your-Complex-Child-Special-Needs/dp/0814473164 massively useful in terms of achieving what you needed to in IEPs and dealing with services etc. great advice on how to turn your childs needs into goals.

The author makes a strong point about remembering that the parent has the most knowledge of anyone present regarding the topic at hand- their child. She gives great tips about how to be as assertive as you need to be in getting your childs needs across. Also very useful advice on how to be assertive without it turning into a personal confrontation. I certainly found it helped a great deal in spurring me on to see what was needed in order to move forward and wish I'd come across it years ago.

agree with both wetaugusts posts there. I feel we wasted nearly 2 years not annoying the school. we would still be drifting now if i hadnt switched strategies to "advocating strongly" DS is doing far better as things start to get addressed and this years IEP actually related to the needs of the child I know

WetAugust thanks. I value your advice. It is just so tricky and I'm new to it. For example, I spoke to the OT and got some advice as she has a long waiting list. School don't want to do some of the things as they think it will make him look different when he's doing ok e.g. use a cushion for writing. And it will be one more thing for him to remember? Questionable that one I know - shouldn't they remember to use it not him?

Anyway, I could battle it out now or chase the OT for an appointment which I have done and she has promised to try and get us one asap in the circumstances.

It should hopefully mean the difference of a few weeks (plus we see BIBIC soon)and may mean I can 'educate' them with a professional's report rather than bang my head against a wall.

Claudia - that looks like an interesting book. It is a learning curve for me and I have battled so far to get him on SEN, an IEP, on SA and to have a meeting with both class teachers and SENCO and I think everyone is still onside. We have moved quite a distance. I need to take stock and get his assessments in.

Its exhausting at times Debs. You do need to get some headspace and switch off from it at times to see your way clear again. Best of luck getting a quicker OT assessment.

Thanks both of you. Starlight I understand completely what you are saying and part of my feeling is that I think, in the end, it will be what I do to help that will be the only thing DS can rely on. I'm feeling my way and already have serious doubts about the knowledge and ability of those dealing with DS at school. That's why I have to be better educated and get all the ammo I can.

CAMHS for example are useless here and they do the ASD assessment so I'm trying to go outside my PCT area because the expertise is not here. I will find a way around that.

It means fighting on several fronts so you have to pick your battles wisely

Spot on Starlight Debs Really disappointed to hear that school don't want to do things because it will make him appear different. That's pathetic! He is 'different' - as not everyone else in his class has his difficulties! 'Differentness' should be the last consideration for failing to provide support.

Have you considered asking for an alphasmart? No personal experience but know other parents whose children have similar condition to your DS and they swear by them?

CAMHS (in my area anyway) are a joke. I think you realise that you are your DS's best and possibly only advocate in getting his needs met. It's just a long uphill struggle.

Best wishes

I know, I used the analogy of a child needing glasses. They might not want to be 'different' but if you need glasses, you need glasses. Difficult teacher - I read it as 'oh not another thing for me to do'.

I had the same thing happen to me, it came out of the blue. It is not necessarily a bad thing. Go in and address it with the school. The upside is it will hopefully identify areas your child may need extra help with. I did not sigh my original iep, I also made the school accountable. I challenged the teacher on why we were at this stage. Why there was not a meeting to construct the iep. and on where we go from here. The problem as i understand it from talking to a number of experts is the range of normal is very wide. The potential indicators for issues are numerous and the school has to match the two, as well as meeting a standard of education criteria. Something has to give and unfortunately it is and child that is not a genius or does not fail completely! Use this to your advantate - infant school is a better time to identify the the need for extra help than junior where there are fewer resources.

Thanks everyone, i am busy scribbling notes on all the advice and just about to look at the SEN toolkit.

Apparently SENCO hadnt seen the SALT report before she prepared the IEP, hence why it wasnt included. So not entirely doom and gloom. I have told her i wasnt happy with the IEP and would get back to her with my suggestions in due course.

Off the top of my head ds has problems with eating in school (his lunch comes home untouched everyday and has done since he started school) he obviously finds lunch time overwhelming. He has food phobia and is orally defensive. At home i have to sit with him when he eats to prompt and reassure him. Now if i ask the school for help with this, will they just stick him on a table on his own?

Debs40 - Hardly a hi jack we seem to be living parallel lifes at the mo!

Claw - what do you want for him at mealtimes? If you want someone to be with him to encourage him to eat either with the rest of his classmates or on a table of his own then ask for it. After all, being unable to eat properly for whatever reason without help is something that would go towards qualifying your child for DLA. So if he needs that help at school it should be provided.

They can only say NO. It's not a case of wanton determination not to eat - it's a psychlogical difficulty caused by his disabilities and as such school should be making reasonable adjustments - including one to one help so he doesn't unintentionally 'self-neglect'.

Best wishes

You have such a way with words WetAugust i want you as my representative

I will write my own 'wish list' and state why i feel he needs it and be specific with what i want them to do about it. (i will certainly be using some of your phrasing)

By jove i think, ive got it!

One more thing does anyone know what a scale score is?

Also math NC level: count.scale score, calc scale score?

sh.sp.scale score?

NC = National Cirriculum but the rest escapes me!

Focus on the big picture items - the common sense practical support that you identify and they should provide.

Best wishes

that Mrs August...shes good isnt she! (hi witty!)

i must get down these boards more often. and i can vouch for what these ladies are saying, there comes a point where you have to press for what you need, or you just end up 5 years later wondering what the hell it was all about. trust me. i only ever got sort of halfway there. if i knew then what i knew now id have taken the buggers to tribunal and no mistake.

I think the thing for parents who dont have a dx, is that you are made to feel you could well be making a fuss about nothing, especially with comments from GP's like 'dont worry, he will grow out of it' or comments from the school like 'if you say he cant do something, he wont' etc, etc. They have a knack of putting that doubt there and making you feel like an over anxious mother!

Probably a really silly question, but are schools usually all for statementing or against?

Wetaugust - Ive come to a stumbling block and would really appreciate your advice on this one.

Ds is incontinence, well partly, he doesnt feel the necessary sensation until he has already started to go, he tries to hold it in and rushes to the toilet at the last minute, but already has poo in his trousers and around his bottom. Now teacher has wipes and spare trousers and all he has to do is ask, but he wont. The school have given him a card to use instead, but he wont use that either.

So he stays that way all day in school.

At home he asks for help and i clean him up etc.

How do i incorporate this into the IEP?

Sorry guys i know im driving you all insane, based on ds's IEP should i be asking the school what they intend to do about it or telling them.

For example IEP states:- X often misinterprets emotions or actions causing him to feel rejected and isolated? How are the school going to help X with this?

or this is detrimental to X's self esteem and is causing a barrier to X being able to build positive relationships. I believe that X needs one to one help with this. (should i also state how much one to one help, if so what is a reasonable amount of time?)

Claw

I've heard other parents complain too that the school ignores their children when they have soiled. I seem to remember that in this instance school should draw up some sort of Care plan, in addition to the IEP, to address this specif issue. Leaving himinthat state is simply not acceptable and a letter to school to that effect is definitely called for.

Your example:
X often misinterprets emotions or actions causing him to feel rejected and isolated? How are the school going to help X with this?

The first sentence is the 'need'. the next part should state the support e.g.

1. X will receive n hours of one-to-one support each (day / week / month) provided by (who) which will aim to proactively teach him social skills To be reviewed each (month / term and revised targets set in response to progress.

2. X will be provided with the opportunity to practise his social skills in a sheleterd group of (n) classmates, (X) times per (week/month) during which he will be observed by (who) and will receive praise and feedback on how weell he did, and what he could do to handle situations that arose during this activity. To be reviewed......

That sort of thing - explicit and SMART.

List his problem areas and then write a strategy to tacle each proble area that is SMART.

Claw, we had a care plan about this sort of issue when DS first started school. It included the who would deal with it and what would happen if an 'accident' happened.

WetAugust - You are a star, thank you so very much.

Thanks Debs40, i am off to google example care plans, the school dont seem to know how to write these sorts of things and neither do i, so the blind leading the blind!

Practice makes perfect huh