I feel let down by the school

[skewiff]

DS started school in September. He's in reception. DS has hemiplegia which is mild cerebral palsy. He can barely use his left hand and its full of spacticity.

The CP also affects his balance, leg, eye - whole of left side.

The school agreed with me when he started that we could do DS's exercises at home in the morning and that he would start school every day at 9.40. I assumed that this meant for the whole of the reception year and that it would change in Year 1.

Then suddenly a few weeks ago, at the end of a meeting with SENco and teacher - which was about a whole mixture of stuff, they announced that they wanted me to bring DS in at 9.10 instead - so that he could be there for carpet time. They said I could think about it, which I did and I wrote them a letter explaining why we'd prefer to stick to what we were doing.

Basically I said that DS is far too tired to do exercises after school. This is our last window of opportunity to do exercises with this sort of intensity. DS benefits HUGELY from doing these exercises. He cannot go to bed any earlier (already goes at 6.30) and cannot get up any earlier etc etc

Anyway a whole month went by. Nobody said anything to me. Then today we had our annual review with the paediatrician and the teacher came. She started the whole thing again, backed by the OT this time (who is new and a locum, I"ve never met her before). They grilled me for half an hour about whether and why I could/ could not bring DS in any earlier.

I"ve been to the school since to explain myself yet again. They want me to start DS full time after Xmas. He is not 5 until March.

What am I legally allowed to do????

I think legally they have to be in full time education from the start of the term before they are 5, so yes, after Christmas. But morally and sensibly, WTF? Surely exercises are more important than carpet time? It's reception, not A levels!

is there a reason why the TA can't be trained to do his exercises during school?

i know a lot of kids that do get their phsyio in school in this manner, and then in theory they get more of a chance to establish themselves with their peer group and don't miss out on the 'organisational' aspects of first thing in the morning, or the carpet/ circle time elements, which can also be really useful for children who are noticeably 'different' for social reasons.

legally i think he doesn't have to be there yet, so obv not enforceable, but i would be more concerned about maintaining a working relationship with school.

does he have full time 1-1 support? or any hours in his statement for 1-1? does he have a statement?

what are ot doing about his access to the curriculum in the form of pencil work etc?

'A child becomes of compulsory school age when they reach the age of five and, where a parent has elected to register their child at school, they must start school in the term following their fifth birthday. A child continues to be of compulsory school age until the last Friday in June in the school year that they reach the age of 16.' - from the directgov site - sorry don't know how to do links.

HTH.

Sorry, pressed too soon.

Your child does not have to start school until the Spring term. Dd who turned 5 in September is not in full-time education yet.

It is also possible to flexi-school after they turn 5. You can find out what the school and local authority policy is regarding that, always keeping in mind that everyone is supposed to act in the best interest of the child.

yy, i thought it was the term after they turn 5. so not essential.

but still try and keep the lines of communication open with the school. what do they suggest wrt physio?

We do 30 - 40 mins of exercises with DS every morning (he has spastic diplegia CP) before we leave for school. It is a bit of a military exercise though as we much start at 7 as we have to leave at 7.45, so we wake him up at 6.15 by which time we are already dressed and breakfasted!

However he is Y2 and from my point of view he needs to be there at the beginning of the day as so much happens in that first half hour that is important (I used to be a teacher!) However both his LSA's have been trained to do his exercises and he has them done twice a week at school during PE time so if we miss a morning because he's too tired etc then I don't fuss.

Is there any way you could get him there earlier - how long do you do exercises for? I'm just wondering if there is a compromise? Can you do half of it at home and his TA do the other half at school? DS has missed loads of school due to a three week intensive pysio course we did three times a year, but in the end we stopped that because it was impacting so much on the social and other aspects of school that, for him, it was not worth it in the end.

Sorry - this is not really very helpful, it just about what we do! I hope you find a solution - after school is not it though - they are just too tired.

The thing is DS has a level D statement. BUT the school say that he doesn't need a TA. The statement says 'some 1:1 help should be provided'.

I agree he doesn't need a TA for day to day stuff. DS is very good at 'coping' with one hand. However it is not good for him physically to use just one hand, obviously. The less he uses his left hand the tighter and less useable it becomes.

The school says that if Samuel had a TA they would stop him interacting with the other children.

I think that if they insist on him being in school (and from Yr 1 when I'll definitely have him in at the beginning) I'll ask that he has a TA - as I don't want any Jo Bloggs doing his exercises. It needs to be one particular person.

zzzzz I have said to the school that I would home educate DS if I had to drop his exercises.

But DS loves school so much I would feel awful doing that. Plus I know DS would not get a place at the school later on. It is really oversubscribed and I'm sure the school would make an excuse for DS not to come back.

I am going to just 'carry on' doing what we're doing and wait until they put their foot down. DH says they are being really 'bloody minded' about the whole thing. I agree with him. But I can't see why they are being like this.

They say they have no problem with anything else. DS is doing everything else brilliantly and fine and loves school. The teacher keeps saying she feels sorry for DS coming in late. And she said to me yesterday, you live so far away. If you lived round the corner you could do the exercises and be on time. (It takes DS 20 minutes to get to school on his scooter or bike).

I think they just think I'm being lazy or getting up late!!!

I have just rung IPSEA. They say that I can go ahead with what I am doing until the beginning of the Summer term, when it will be the term after DS turns 5.

They said perhaps that could be my compromise and I could then get DS into school earlier.

Truthfully I don't want to compromise - as I just feel that I am compromising DS's wellbeing and future ...

Skewiff - a good TA will encourage and enrich your child's interaction with other children. Could you tell the school that without the TA, your child's interaction with his peers will be hampered by his disability as he might then increasingly lose the efficient use of one arm.

Could you perhaps get the OT to come into school and back you up? The NHS OT went into ds's previous school and taught them how to do his exercises and impressed upon them the importance of the doing the exercises frequently etc. Ds has Sensory Processing Disorder.

Yes, thank you, I am going to try for this, next term.

Our NHS OT is going to go into school and I will speak to her and ask if she can help us push for a TA.

Plus we have a review of the statement next term, I think. IPSEA said that in this I"ll have to push to get things a bit more quantified and qualified! ... oh joy!

You could definitely argue that the 1:1 time in his statement should be used for exercises as well. This could be your 'compromise'. If they provide the TA to do them, or part of them every day, or even 3 times a week then you can get him to school on those days... Our physio trained DS's 1:1's in it so they both are ok to do it. They have also done other exercises with previous children as DS in in a school with a unit. I do keep an eye on it though to make sure it actually happens and that they do them correctly!

if the school think the TA will hamper his social interaction then they aren't planning to use the TA correctly. the TA should be facilitating that if necessary, and only supporting, not removing independence.

we minimised this by requesting that 101 support was provided on a rotational basis, so that dd2 + specific TA weren't seen as a team. dd2 is an individual who happens to need a bit of support because she has a physical disability.

school have utterly missed the point.

we have a friend with hemi cp who has similar issues btw (she's 10 now) - the TA reminds her to use both hands where possible, but is otherwise completely unobtrusive. she does her physio during pe (we have daily pe here) with the TA's assistance, as she has got to the point where she prefers not to be included in the class pe lessons as it reinforces her differences, instead of removing them. she's currently having intensive physio for her left hand.

glad ipsea are giving you good advice.

HairyMaclary: how do you keep on eye on the exercises being done in school to make sure they are being done correctly?

Do you go in and watch???? I can't imagine that going down to well ... (with this school anyway).

madwoman: has your school utterly missed the point - or are you saying ours has. I think ours has, but wasn't sure which one you meant.

Yes - I think I'll just keep going with what I'm doing until Easter. And then 'compromise' but insist that a TA is brought in and does part of the exercises every day (if I can actually do that!!).

The school says that if ds had a TA they would stop him interacting with the other children.
What a load of balony. A good TA ensure that he interacts with his peers and just facilates this. I am a TA and that is what I see my job as. Sometimes that means I'm fully hands on or I initiate play which then pulls other children over. Sometimes that means I step back and observe and just say an encouraging word to keep on task. I'm not there to do the work for them nor am I there to replace or get in the way of their friends.

Hello beingarebel,

Thank you for your feedback. I have been putting my trust in the school. I really really want to believe that they are doing the best for DS. But slowly I feel less sure of this.

Of course straightaway I was suspicious that they were trying to save money. However I also could see there point ...

DS has hemiplegia/cerebral palsy. He can use his left hand as a tool (mostly when its in a fist) to help him with all sorts of stuff. But mainly he has to find a different way to do everything. And he is very successful with this.

There are things, I know, that he just avoids doing. Like, he never ever comes home having made anything, because he can't. And he won't climb the playground equipment because it is too difficult. But the school insist that he is accessing the whole curriculum

I don't see where or how a TA could help DS at the moment (other than doing his exercises). DS is very strong willed and likes to be left to freeplay.

I think once he is in Year 1 and things are less free he will then have to do certain tasks (like making/building, I am guessing?) and then a TA will be almost essential.

What do my comments sound like to you? Do you think I am in denial? Or that DS is being shortchanged?

sorry, i meant that your school were!

do you think that ds would like to be able to build/ make? i know dd2 loves to (she has athetoid cp and her fine motor is atrocious - one side is also weaker and she used to just prop with her right hand, so i do know where you are coming from. i have no idea how she uses a computer mouse, for example, but somehow she does!) but she does need a fair amount of help. so at school (and at brownies, and whatnot) that's what the extra support is for - not to do it for her, but to give her a hand if she needs it. whilst she works out how to do it herself with the tools she has.

it's a bit sad if he's avoiding doing stuff. maybe a TA would give him more confidence to have a go? (dd2 frightens the life out of me on a climbing frame) d2 is very strongwilled, but has got used to asking for help or seeking it if she needs it. but it has to be there in the first place iyswim?

what are they planning to do wrt pencil work? dd2 needed a lot of help - the freind with hemi is currently being assessed for one of the keyboards that are set up for single-handed use, are they getting ds to prop and hold the paper with his left hand/ fist? dd2 found this nigh on impossible tbh, and a TA was really importnat to stop her getting frustrated and at least give her a chance to learn to write.

i think it sounds as though ds is being short-changed, but that you might be unwittingly encouraging it . not on purpose, because there isn't a requirement really at this point, but if there are things he is actively avoiding because he finds them difficult, i think school need to be a bit more pro-active and work out how they can support him to have a go.

freeplay is fine in yr r. dd2 had ft 1-1 though, so she was able to access all of the elements of free play. not just those she could manage on her own within the confines of her disability.

Yes, I think I have been unwittingly encouraging DS to be shortchanged.

The school are renowned for being excellent with SN children. The best school for it in our area. So I have been wanting to trust them, wanting to keep on good terms with them, wanting to not be an interfering mother etc

Now I am not sure what to do. Tomorrow is the last day of term. I have just had, what feels like, a fall out with the school over my refusal to bring DS in earlier. I've said I'll keep going with his exercises in the morning until Easter.

I don't feel that going in to talk to them tomorrow is going to be a good thing. They'll be winding down for Xmas. They still are probably a bit pissed off with me. And I don't want to start the whole conversation again about whether I'll bring DS in earlier. I know they'll want to restart this conversation at any given opportunity.

I think the beginning of term will be the same really, in that it won't be a good time for the above reasons. Is it OK to wait a couple of weeks into term to discuss this (accessing the whole curriculum and having a TA)with them, do you think?

i think by the new year everyone will have forgotten the drama tbh. and january is a fresh start sort of month.

when is your ot visiting school? ours went in at least once a term at this age and was always on call for advice. she had a lot of input into iep targets etc. we also had joint visits with physio and ot to school every so often, so that the school could get a full picture.

ot and school liaison will be really important in the next couple of years whilst they sort out what the best option is for him wrt writing etc.

have a breather over christmas and maybe take a step back and look and see if ds is really avoiding doing stuff, and if he might be able to be encouraged to tackle those activities with a bit of support? he might go back to school dying to make stuff

he sounds as though he knows his own mind, anyway! and that's always a really great thing.

enjoy the break ! x

Thank you madwoman,

All of this information help has been so useful in my formulating a plan. At the moment I am trying to get support from OT and/or physio so that when I go to school in January they are also pushing for a TA for DS.

Physio and OT are so non existent and transient in our borough that I don't have a professional that I actually know at the moment, dealing with DS. They are all either temporary or brand new.

So far its been me on my own dealing with school and I'm too easy to fob off, i think.

Its interesting what you say about your OT and physio being more involved ...

Is school liaison an actual helping body of people???

And the school don't seem to think DS has any problems with writing. At home he writes a few letters and they are very big, but OK. He writes with his unaffected hand and holds the paper down with his affected/left hand which is in a fist.

Our private OT has assessed DS for visual perceptual problems and thinks that writing could be an issue for him ... I am probably being naive about this too. I just find the how difficulties at school thing so hard, because you can't see any of it and I'm putting my trust in other people ie teachers and what they say.

we've never used school liaison, but not had to, so not sure tbh.

your lea may have an 'STA PD' (specialist teacher advisor for physical disabilities) as well - some of them do, alongside the VI advisor etc. might be worth finding out?

and hey, he's in his first term in yr r. i don't think you're being naive, it just takes a little while to get to grips with a new setting etc.

ot let dd2 try and work out the writing thing herself for a little while, too. so just keep an eye.

Why isn't he coming home having done some art. A TA would facilitate this for him. I get the impression he could paint and he could stick with assistance. This is exactly the sort of thing a TA would help with. Along with doing the physio exercises. Any TA should be trained by his physio to do the exercises correctly.