[N+J]

Today the educational psychologist came to assess my son for a statement. He is nearly 3 and has left sided hemiplegia, mostly affecting his arm and hand, but also balance and left leg a bit - aswell as all the other extra stuff - eyes, glasses, sensitivity to noise etc .

Right from the start she was trying to put me off from applying for a statement - even though all I want is a lower level one that ensures he does not get forgotten- it doesn't mean the school is given any extra money.

Her assessment was identical to the paediatrician's assessment. It all involved assessing cognitive skills, language and how Samuel uses ONE hand only.

She then watched Samuel in the nursery setting for a grand total of 5 minutes.

The report will be written up and she doesn't reckon we stand much chance.

I am going to write her a letter with all the things in it that she missed.

This is mostly a rant - I'm sorry. I feel so angry that we have to fight just to get the recognition that our children need a bit of extra attention.

I suppose I just wondered if anyone else had been through anything similar, and if so had any advice. What happens if we get rejected? Can we appeal?

Thank you,

Nicola.

[Nathard]

urg it sounds like they'd made their decision before they'd even started! I'm sorry i can't offer much help as i'm a step behind you and just posted the letter off yesterday requesting assessment. I'm not sure whether a letter at this stage would help, but you do definately have the opportunity to appeal the outcome. Either or both cerebra and scope have good guides to the statementing process - cerebra i think - maybe worth having a look through that.

[jaynepick]

Hi

I'm about to try for a statement for Sam - he moves to middle school when he is 9 next year and although his first school have funded someone for PE and class time it has all been very informal (just from me having a moan at the SENCO) rather than a formal statement - like you he may be mild but I don't want him forgotten and to not have the support he might need - however minimal that might be.....
Sounds like I'll have my work cut out getting it sorted !!
Not much help - sorry
Jayne

[mcgowan]

My son who is 11 years old, also has a mild left hemi. When he was 4 years old we were told he would not be getting a statemet for his additional needs. I fought this very hard I included my MP and was fortunate to have paedatrician on side. I learnt very quickly to never paint a rosy picture but to look on the black side. I also learnt to be forceful with the professionals and putting my point of view across clearly. Get yourself a copy of the special educational needs code of practise from your LEA. Lots of valuable info there.

We have fought every year since. To make things even harder we are a forces family and have to move around. Every county is different. Advice to you all out there avoid Cambridge if you can. They have been our biggest battle to date and we have had to involve the Education Ombusmen to fight our corner. I forgot to mention that from the start Oliver was awarded 32 hours a week 1 to 1 support. We played more on his medical needs. (partial seizures). Dont ever give up fighting as only you can fight for your child.

[helenmallett]

Nicola,
I have a son,Jack, who is 8 (Year 3) and has left sided hemi.

Firstly, I just want to clarify with you that a Statement of Educational Needs does mean extra money for your child. Money is allocated to pay for a specified levelof support/resources which are laid out within the Statement. This money is not for the school but your child and should be spent accordingly. A school/nursery has an obligation to show that they are trying to meet the needs of the child within their budget and is calling in help from outside agencies. When the level of support that is required exceeds what is practical for a school to give from its own budget a detailed report is made-not just by the ed psych but also by any other department your child may be involved with - paediatriacian, OT, physio, speech therepy, yourself etc.

We started our first tentative steps towards obtaining a statement when he was just over 2 and had inclusion and pupil support (IPS) from the LEA. All this consisted was a pre school support worker who would come in periodically and support the nursery with writing individual education plans. When Jack started at school it was felt that although he experienced difficulties with independence, concentration etc so did many of his four year old peers and therefore the difference was not enough. It is worth understanding that the process unfortunately works from a negative stance rather than a possitive one, recognising not what your child might be capable of WITH support but the level at which they are failing. This must be significantly greater than their peers. Finally after MUCH pushing from both myself and my son's wonderful school we managed to obtain a statement just over a year ago. The process took me just under 6 years!

My advice for you is to talk to your nursery about their concerns - how is he coping with his day there? Is he coping with the activities? are they able to cope with him? I would asume that he has an individual education plan - get your OT and phyion involved. Document all meetings and ask for copies of all IEPs/reports etc. You will need them. When you feel that your son is not coping with his day learn to say so and make note of any visits into nursery/school. Make sure that your setting, whether it be nursery/playgroup or school are keeping records from his IEP targets and that the Ed Psych feels that these are appropriate. If and when you do go for a statement you will need around a years worth of records showing that the setting has tried a variety of strategies to help your son progress. I completely agree with McGowen below, that you must always look to the negative side when describing your child's needs, I think that this is the hardest thing sometimes because as amother your natural instinct is to instill confidence in your child by 'bigging them up'!

Finally, when you go to look at your child's school it is worth finding out if they have any experience with hemiplegia. Certainly it is worth looking at how the setting will react to your child and the level of support that they will be ableto offer. We were really lucky that our local village school had small class sizes with high lebels of Teaching Assistant support and had already had a child with CP. Do not be afraid to use this information as supporting evidence if you decide to go for a school that is not your local catchment school.

Brace yourself for the long haul. Make a good relationship with your child's setting's SENCO and ask all of the agencies that you are involved with to support you. I have always found that it is the community paediatrician who keeps things moving - her opinion seems to swing a lot of influence. Also it is worth remembering that not every child with hemi actually needs a statement, it may be that they progress well with a bit of extra help that can be provided bythe school but if you do feel that they are struggling let everyone know.

If you would like to talk at all, please let me know.

Hope this is helpful - you will get there.
Good luck
Helen

[N+J]

Thank you all of you for your detailed and extremely helpful replies.

McGowan - we were thinking of moving to Cambridge so will take your thoughts into our consideration ...

Helen - it sounds like we will not get a statement sorted in the near future. My son is now just 3. When you say to argue that a school (if it is not local) has small classes etc and experience of CP - does that work if your child does not have a statement?

Actually I would like my son to go to our very local school - just round the corner, but it is very oversubscribed. Would I use this kind of argument in an appeal?

Nicola.

[Jane72]

N+J, on Feb 12 2010, 12:28 AM, said:

Thank you all of you for your detailed and extremely helpful replies.

McGowan - we were thinking of moving to Cambridge so will take your thoughts into our consideration ...

Helen - it sounds like we will not get a statement sorted in the near future. My son is now just 3. When you say to argue that a school (if it is not local) has small classes etc and experience of CP - does that work if your child does not have a statement?

Actually I would like my son to go to our very local school - just round the corner, but it is very oversubscribed. Would I use this kind of argument in an appeal?

Nicola.

Hiya

Regardless of whether you get the statement or not, the council and school have to make sure your child is provided for propperly, if the child has special needs this also applies, meaning they have to put in place the extra support the child needs. If that doesnt work, then you could argue a statement was needed (and as a parent, you have a right to formally request that the lea assess for a statement, and if they say no, take it to appeal), as the school couldnt cope or indeed a propper assessment for a statement would identify all your childs needs so the school would know what to do.
I think you could argue for the local school, you can say its in your childs best interests to goto the school thats closest due to the fact his special needs mean he tires easily and extra travelling would disadvantage him in school because he was knackered before he got there!. Also if there are extra reasons, like small school etc that would suit even more, say everything you can think of to get what you want and he deserves...........if whats offered is totally unsuitable, then keep him off, and liase with lea to get whats appropriate........yes its law your child either attends school or is home educated at 5, however, that education has to be suitable, this is what you fight armed with!...balls in their court then to provide!. see the sen code of practice too, preach to them chapter n verse, gets em everytime figting with their own rules you turn on em!.

if you need any advice, Ive found ipsea helful with my special needs kids....I myself have hemi, but ive an autistic child whom ive had to fight for, so I know my way around the systems now lol........

http://www.ipsea.org.uk/

Hope that helps......

[N+J]

Hello Jane,

I have already thought of homeschooling my son. I think its better he goes to school - at the moment - but I have thought that if he wasn't able to go to somewhere suitable that I would home school him for a bit first ... we'll see.

They have accepted our initial application so are going ahead with the statutory assessment.

Have you done this?

They will be asking physios and paediatricians etc for reports. I've got to write something.

Should I include anything in particular - apart from the obvious worries - and /or get any special kind of evidence/ reports ??

My paediatrician wants to send in the report she did of Samuel last May! I think I'll have to try and get her to see us again, as that may no longer be relevant.

Thank you for your advice.

Nicola.

[Jane72]

N+J, on Feb 13 2010, 10:54 PM, said:

Hello Jane,

I have already thought of homeschooling my son. I think its better he goes to school - at the moment - but I have thought that if he wasn't able to go to somewhere suitable that I would home school him for a bit first ... we'll see.

They have accepted our initial application so are going ahead with the statutory assessment.

Have you done this?

They will be asking physios and paediatricians etc for reports. I've got to write something.

Should I include anything in particular - apart from the obvious worries - and /or get any special kind of evidence/ reports ??

My paediatrician wants to send in the report she did of Samuel last May! I think I'll have to try and get her to see us again, as that may no longer be relevant.

Thank you for your advice.

Nicola.

Hiya

Its good they have acepted to do the assessment, thats the first hurdle over........

I went through this with my son.....they will ask you to attend verious assessments like maybe an OT, maybe an educational osycoligist, maybe other people too......let them do all this, but ad in your concerns, if you can get these people on your side they may put extra bits in their reports to aid your case. It is good if you can get very up to date reports about any of your sons needs, the more evidence you can get, the better picture they get, and show exactly what your son may need.....also, once this is all done, and the lea send you a draft copy of a statement, if they agree to do one after assessment....do make sure it quanifys exactly what your son needs, if its loosely worded, whats provided maybe not be whats needed, as they tend to stick to the letter of what they can get away with....if its quanified they cant simple!.

I learnt this very quickly as speach and language therapy was listed on my sons statement, but just that, not quanified, so lea and sch thought that seeing a therpipst once a term or every 6mths was ok, for a non verbal child who got no support in the classroom either....I had to go through the process of getting the statement amended, and changing schools, he now gets wonderful provision, but after a 5 years of battles....that was now 5 years ago, and its made so much diffferance to him.....shows how important wording can be!.

If you are not sure of anything on the forms the lea are there to help, also do ring ipsea, they are very helpful ....

[*wendy*]

how you getting on nicola? have you had any progress xx

[phig]

Hi Nicola,

I've only just read through your post as I've not used the message board for a while. I really can't stress enough how parents need to be strong and fight for what their child deserves. We are only just going down the statementing route in year 7 ( age 12) after being put off over the years with comments like 'you don't have any chance of getting a statement from your LEA', 'statements are 'old hat'' and being told school are 'coping with his needs'.
With hindsight we really should have pushed from the start instead of agreeing to adopt the wait and see approach. Our main problems have centered around lack of understanding of the condition. Teachers can look and think it's only a physical disability and not understand that this is sometimes only a small part of it. In my experience through talking to similar people if your child is fully assessed by all the professionals and a statement drawn up it helps so much more with the understanding than a parent saying ' he has problems with concentration, attention span, following instructions etc etc' and them coming back with comments like 'oh that's boys in general' Aaghh! they don't take you seriously.
Now of course in Secondary my son has no help, some awfull teachers and things are starting to fall apart. Hopefully, this time we will get it sorted and get him the help he needs and deserves.

Let us all know how you are doing,
Take care,
Pamela

[N+J]

Gosh, I am so so grateful for this hemihelp site/forum.

Pamela, We really have been put off from the start too. I have become so confused because I'm so positive about Samuel and he is doing so well (for a child with hemiplegia) that I keep thinking that THEY are right and that I am just making a fuss about nothing.

We have just been sent what the physio has written for the statutory assessment and it is rubbish. Such such rubbish. It is sparse and empty of any detail whatsoever and then what she has written is inaccurate. She makes Samuel sound as though he can do everything another child could, but he just chooses not to occasionally. I feel very confused by her report because I thought she was on our side.

Anyway, I'm going to call her tomorrow, but don't know if there's anything that can be done now. Should I call the actual assessment people - because the OT wrote that Samuel could almost dress himself independently, when he can't do a thing without assistence.

I left this because its written correctly in the paediatrician report and my report - but I think now I'm going to correct the physio I better try and correct the OT report too.

Reading this back - the post sounds as muddled as my brain feels. Sorry.

Nicola.

[phig]

Hi Nicola,

You may want to have a read of the reply I received from Paula under 'Statemanting in Secondary yr7'. As she correctly points out, the psychologist also works for the LEA so be prepared to say if you don't agree. I'm not sure what would happen next as we are not at that stage yet (have only just signed the forms to give the school the go ahead to have him assessed). Surely if you think it's rubbish you should be allowed to challenge this? As Paula says, how would he cope in a large classroom setting with no help or support? Can you imagine him dressing for PE or swimming by himself?
Don't give up, best of luck,
Pamela

[N+J]

[quote name='phig' date='10 May 2010 - 11:36 AM' timestamp='1273487811' post='16739']
Hi Nicola,




Hello Pamela,

Thanks for your reply.

I have phoned the physio department. We were supposed to have an appointment today but this was cancelled. I've gone through everything that needs changing (nearly all of it). Hopefully they will agree.

Actually during the whole of my worrying/ complaining they put me through to the statutory assessment man who is saying not to worry because once the statement is written there will be time to correct things.

So it sounds as though the statement is going to be written can't believe it till it happens though. Plus as I pointed out if all the wrong info is put in from the beginning, they'll make it a lower level statement than it needs to be. And from my experience going backwards to change things is always harder than going forwards.

I did read the reply on your thread and it is very helpful.

Thank goodness for hemihelp forum - i say again!! If it wasn't for the things I have read on this site I would have given up at the first hurdle.

The SENCOs at schools I have been visiting have been saying that what you see with Samuel now is not necessarily what we are going to see in a few years time. They're not being negative but rightly pointing out that behaviour problems and dyslexia etc as well as other stuff could appear and then its much harder to get a statement apparently.

So even at this late stage your story has kept me pushing for it.

Thanks again,

Nicola.

[N+J]

Just to update: -

I feel a bit bad in writing all of this, but need to get it off my chest ...

We met the physio today to go through what needs changing on her report (bare in mind she kept the whole process waiting for 3 weeks and then has been off sick this week and all the stuff urgently needs to be sent to be assessed by this coming Tuesday. It was supposed to be earlier, but they have postponed it for her again).

After arriving 20 minutes late and telling me that I had 20 minutes to go through it - she then looked really fed up that I was asking her to change things such as 'Samuel can climb stairs unaided' to 'Samuel needs a hand rail on the right to climb stairs unaided'. She said that the fact he needed a right handed hand rail was common sense and the people reading her report would just know this.

I said that I thought they would not 'just know it' at all and that the report should be written in a very explanatory manner. To which she replied that it didn't matter what was written in the statement at all. THEY had already decided what level of statement Samuel was going to get. They do this apparantly by way of: - if your child has Downs they get this level (her words) and if they have hemiplegia they get this level etc etc (mmmm total rubbish I think!)

I said I know that parents fight to get the wording exactly right in statements and she said the wording doesn't matter because once a statement has been given the professionals go into the school and tell the teachers what needs doing anyway.

When I asked her to change 'Samuel can catch a ball' (because he can't) she said she'd seen him do it twice in one of her sessions. I asked her to get him to catch a ball 10 times now and see how many times out the ten he could do it. Because I practise it often with him and it rarely seems possible for me unless I throw it really close up and right into his arms. At which point she said that all her appointments with me overrun, that I am anxious and this is all infringing on her family life.

I said I was not happy with these accusations and she burst into tears for the rest of the session. I spent the rest of the session calming her down. Nothing has been changed on her report and it needs to be in on Tuesday.

She says she'll change the report, email it to me by Monday and I can read through it and get back to her. I believe (or am hoping) that she will.

But after a really unproductive session (where her problems took up all of the time) I know that its going to come back still not right (we really did not get to talk constructively about anything and she doesn't seem to be brilliant with words).

I suppose I'm just wondering how much more I can ask for things to be changed when it is obviously pushing her over the edge, we have such time constraints and she isn't really very handy with paper work (as a physio she's quite good).

Not sure if we should get a new physio after all of this either, but that's a thing to think about later.

Sorry to go on and on. Just needed to off load.

Thank you,

Nicola.