[N+J]

Hello,

My son has a statement of special needs. It is supposed to be a Level D - although they won't print it on the actual statement for some reason ... He has left sided hemiplegia.

On the statement it says that he is to be provided with some 1-1 and some small group support. But neither of these things are quantified. He does not have a 1:1 assistant and the school are insisting that he is doing fine in all areas of school life. I believe that he is because he is very independent and manages alongside his peers generally, despite his very real physical limitations.

Samuel started at school in September. He is in reception. I have been called in a couple of times because of behavioural things. Once he pinched a boy and the other day he refused twice to do as the teacher asked. The teacher says that he tried to hit her when she tried to put his coat on. Samuel says he didn't. I believe that he probably swung his hand a bit at her arm. He does this to me. As if he is going to slap my arm, but he usually misses. I said to Samuel in front of her (because I did not like the way she was speaking to either of us and felt intimidated by her - it was the only thing I could think of to say) 'I am confused as to why this has happened Samuel. You have been so good for so long'. At which point the teacher looked very disgruntled and as if that had not been the case at all. I said to her 'oh hasn't he?' and she shook her head.

Anyway I feel cross because the teacher was quite aggressive with Samuel. She was demanding that he looked her in the eye as she spoke. He can't do this when he is being told off. I have tried and tried and now I just get him to lie on the floor and listen to me (otherwise he fidgets and fusses and distracts himself). She also was nastily saying 'don't smile. Stop it. Its not funny' over and over. I am cross that she is insinuating that he has been naughty for a long time, when the last time she said anything to me was 6 weeks ago.

Now I appreciate that it must've seemed very rude for Samuel to have been smiling. But he does this when he is nervous and uncomfortable. And he is only 4.

Plus I think he does have behavioural things connected to his hemiplegia. I just don't know what is what yet. Again he's only 4 and it is difficult to know what is normal 4 behaviour and what might be something more. Samuel is definitely a handful. He is very strong minded. He does not like to be told no. He can get very exciteable about things and then hyperactive. He has attrocious attention.

I could go on.

What I want to know is. How can I get identified what is to do with the hemiplegia and what is not? I really do not want to go into labelling him further. But I need the teacher to know that some of the stuff that she is dealing with is to do with the brain damage that has happened. And that bullying him is not the best way of getting Samuel to behave at its best. It will in fact make him go the other way. Unfortunately nothing in the statement is to do with behaviour yet. But the statement was written when Samuel was 3.

I want to arrange a meeting with the teacher and the Senco. Do any of you have any tips of things I might say, do or ask in this meeting?

Thank you,

Nicola.

[Adam's mum]

Hi Nicola

Adam is now in year 1 (has left hemi, epilepsy, shunt...). He did not get a statement, instead he has Medical Hours to cover him at school (25 hours from county council, rest from school budget).
I have found his school very supportive and understanding, I did have a chat before he started school with his 1 to 1 TA about his medical and behavioural problems. I also supplied the school with Hemihelps 'Guideline for Teachers (Primary Schools) and insisted that all staff who work with his should read it.
Also, Adam's OT and physio go to his school once or twice a term to see how he is getting on, I always go to these appointments to chat with the TA and OT about Adam's lack of attention, refusal to do work which he finds hard (i.e all writing and drawing), and about his slightly obsessive behaviour. The teachers and TAs accept that all the behavioural issues are probably linked to the hemiplegia and the fact he knows he can't do the same things as his friends.
With Adam, I find he is doing pretty well at school, he certainly needs lots of additional help to encourage him to have a do at the things he find hard, including all fine motor skills, some socialising, and also to prevent him having tantrums when not allowed to do what he wants to do. The staff have got to be extra friendly and welcoming to him, as he would much rather be at home with me rather than going to school (he has frequent tantrums on the way to school, screaming that he hates school and it is rubbish).
I haven't had much help from the school SENCO, at Adam's school the headmistress had dealt with all the applications and appeals with Medical Hours, she would be the first person I would go to with a problem.

Good luck, Roz

[N+J]

Thank you Roz,

I am really puzzled as to why Samuel does not have a TA. But I'm not sure whether to push for one or not. Samuel is really really good on his feet. His balance is brilliant. So much so that he has just learned to ride a bike without stablisers. I am not trying to boast by saying this. Just want to show how seemingly fine he is.

However - he has very limited use of his left hand. It opens enough to hole onto handle bars and pick up small things. But Samuel's hand is clenched most of the time and he uses his fist rather than his fingers, I'm sure you know what I mean.

This means that he cannot do anything that really requires properly using two hands. But in reception he is coping (because he is avoiding the activities that he cannot do, I think). I'm just not sure how much is compulsory in Yr1 that requires using two hands ... I feel so thick in saying this, but I just don't know what the school day is comprised of.

I have asked that they consider getting a TA if Samuel needs it for next year. But they haven't committed themselves to this.

When you chatted to the school about behavioural problems with Adam - did you actually have proof that these behaviours were connected to his hemiplegia, or did they just take your word for it. I don't know how we would find out what is actually connected to Samuel's hemiplegia. Do I just guess?

Oh - yes and one more thing. Sorry. Where did you get hold of hemihelp's guideline for teachers?

Thank you so much for your help so far and sorry for asking so many questions.

Nicola.

[/quote]

[Adam's mum]

Hi Nicola


Adam goes to mainstream school, but they do seem to be very organised when it comes to extra help. I think all the kids at Adams' school who have special needs end up having 1 to 1 TAs to help for some of the time, obviously it depends what has been awarded. As I said, Adam gets 25 hours medical hours from the county council, which is topped up by the school to full time. Last year he had one TA for 4 days, and 2 others to cover the 5th day. This year he has one TA for the 5 mornings, and 3 others to do the afternoons. For some disabled children who need more help (for example one boy with Down's Syndrome and another who is autistic) the school employs new staff with experience of these conditions.
Adam obviously needs help with using the toilet, changing for and taking part in PE, and to prevent falls in the playground, but he also needs so much more help than expected in class to get him to join in, like Samuel he refuses to do things he doesn't like or finds hard.
Adam has always been lovely if he gets his own way, and horrid if he is refused something. So throughout preschool the SENCO was aware of this, and had various strategies to get him to have a go at the harder activities - for example he would never touch clay or anything sticky. She wrote comprehensive reports to the school about his behaviour, and I told them I was very worried about him having tantrums. His Community Paediatrician probably also mentioned his behavior in her report. He has never seen a psychologist.

The guideline of teachers is from Hemihelp - I think it costs £20

Roz

[N+J]

OK. Thank you Roz,

Well, I am a bit confused now. After worrying all weekend, I went to speak to the class teacher today after school. I said that I had been concerned that Samuel must've been behaving badly for a while, after seeing her with him on Friday. And she was in a completely different mood, it seemed. She was relaxed and calm and seemed very surprised at what I was saying. She said that Samuel was no different from any other child in her classroom and his behaviour things were just the same as the rest of them. (sorry my grammar is not very good, she used different words to these).

Anyway I said that I would still like a meeting with her and the SENCO and said that I had ordered that book (which looks very good) from hemihelp.

I suppose I just don't know whether to push for (in that meeting) a TA for Samuel. Part of me thinks it would be good to have someone trying to do all the things that he avoids. But part of me thinks (due to the way he reacted at preschool when they had a TA for him there) that it will make him behave worse. Samuel hates being followed and made to do things. He likes to be free and just play, and in reception he can still do this. Perhaps a TA might be better left until Yr 1 ... I don't know. But I also don't know whether by that stage it would be too late and we would have missed the boat.

Nicola.

[Janetmargaret]

Hi N&J

"The teacher says that he tried to hit her when she tried to put his coat on."

Did Samuel ask the teacher to put his coat on? Did the teacher ask if he wanted help and did he say 'yes'?

Maybe she just grabbed at his coat. Maybe she asked and he said 'no'. I'd hit anyone who did that to me.

"This means that he cannot do anything that really requires properly using two hands."

What are these things that 'require properly using two hands'? I haven't found any yet and I'm 63. I've been a teacher myself and brought up a family.

There's always a way to do things. (One possible exception is replacing light bulbs in dangly fittings, but children don't do that at school.)

Janet

[amy_louise]

Hello!

It is thought that hemiplegia can impact on behaviour, whether this is to do with damage to a particular area of the brain, or the frustration of coping with it is unknown I think. Would it be worth trying to get a referral to a psychologist to assess these issues?

[N+J]

Yes amy louise - I've thought about the psychologist thing and may consider it, we'll see. For now I am going to give them hemihelp stuff that explains why hemiplegia could affect behaviour.

Janet Margaret - you are right about the teacher not asking if she could put Samuel's coat on. I don't think she did. And a part of me (of course because I'm his mother) thinks he was justified in what he did.

I have now spoken to the teacher about my worries and she assures me that Samuel just had a bad day and that normally he is just as good/bad as all the other children. My partner is going to the parents evening tomorrow and may/may not depending on what happens bring up the details of what happened.

Janet Margaret - when I say things that need two hands I mean things like clay modelling and making things with boxes and glue etc, woodwork, lego - all that sort of stuff. Playing the recorder and other instruments. These are all things that Samuel loves to do (but he always needs help). I'm just thinking that if he doesn't have an assistant at school these things are excluded from his learning.

Do you agree? I am really interested in what you think, because I am just an onlooker. I have no idea of what it actually feels like to have hemiplegia.

Thank you.

Nicola.