Special needs as a result of a brain tumour - school unhelpful

[whathasthecatdonenow]

Sorry this is long.

My niece had a brain tumour when she was five. She is now eight. Most was removed in an emergency op, but a small part remains and her brain is still mostly squashed up on one side. We were told she was unlikely to make a full recovery, but she has astounded everyone with how well she has done. Walking and talking with just some right-sided weakness. However, she finds school work extremely challenging. She has issues with double-vision and finds concentrating on more than one thing at once impossible e.g. she cannot write the date and title whilst listening for her name in the register. Verbally she is very bright, but can barely read.

School have been less than helpful. She has not been assessed for a statement despite the hospital recommending this (she has 3 monthly scans/assessments) and when challenged by my sister they said they hadn't bothered in the past as they didn't expect her to survive. This was deeply upsetting for my sister as never had anyone even suggested that she might die. Now my niece's reports are stating that she is lazy and the school's only response to her needs is a nurture group once a week.

My sister has a meeting with the SENCO later this week after mentioning complaining to the governors. She has asked me to go along as I am a teacher (but I'm secondary and my school would never be so crap about Special Needs). I think I need to insist on a proper assessment of my niece's needs and threaten with governors and local authority if this doesn't take place.

I would be really grateful if anyone could offer any advice on how to approach this meeting? It breaks my heart to see her being treated by the school as lazy and dare I say 'thick' when she has suffered so much in her short life.

What an awful, shameful response from the school. I think some support from a charity working with parents of kids with SN would be a good thing in preparation for the meeting. IPSEA ans SOS-SEN are two that spring to mind. Apols for lack of link. on phone....It is terrible they have done so little for her so far and what kind of person even says things such as 'we thought she might die' when explaining their thinking. I am furious for your niece :(

Have you got a copy of 'must try harder' from the Brain Injury Trust? This would be very useful, probably essential, reading for her teachers. Your sister could also make a parental request for statutory assessment. Having a tumour removed counts as a brain injury and it would be hard for a local authority to justify not assessing her needs given that there have been structural effects in her brain and educational consequences are emerging as she gets older. School are being quite seriously negligent though. this is the link for 'must try harder' though I think you can get it free as a family member if a child with an ABI?
www.trust-ed.org/publications.html
The child brain injury trust has lots of useful info online about getting help in school. Good luck.

Thanks for your post, I will investigate those links. If I was my sister I'd be changing schools, I think, but my sister lacks confidence and finds it difficult to challenge authority. I'm just disgusted that she is now in Year 4 and has not progressed since returning to school after the tumour in Year 1. She is now being shouted at on a regular basis and I've just discovered after a quick look at the school website that she is being taught for half of the week by a HLTA, not a qualified teacher. The only thing she seems to get from school is interaction with her peers - there seems to be no educational benefit to her attending at all.

Thank you so much - I have sent for a copy of 'Must Try Harder'.

IPSEA has a template that your sister can use to apply for statutory assessment herself :)

Forget this school as I think you already know they are not going to help support your niece. Best thing your sister can do is start the ball rolling herself.

Ask the hospital for support in a written report that they feel she has special educational needs due to her brain injury/tumor. Does she see an Occupational Therapist regarding right side weakness? If so as the OT to write a report on her mobility/coordination issues to support the SA application.

Collect every school report showing her educational levels and that they have not increased at all.

Advise your sister to email school with any concerns from now on or any meets have minutes taken or take an advocate with her then email a "just to clarify" sort of email so that the school replies confirming all they have said that they will or wont do.

Paper trail is now the key and I wish your sister all the best in getting support for her DD x

Um, if she is 'being taught half of the week by an hlta, not a teacher', do you mean the class is being taught by the TA as a group, or that your dn is being taught 1-1 by an hlta for half of the week (ie as if she had 15 hours 1-1 support provided?) sorry, just clarifying! Obviously if she is getting 15 hours 1-1 that is great, and she probably wouldn't get much more even with a statement.

The paediatrician can and should write to the LEA requesting a statutory assessment. Your sister can apply herself, submitting a handful of specialists reports as evidence of need.

The class is being taught by a HLTA, my niece gets no support other than a nurture group once a week.

My niece does see OT who wrote to school recomending a laptop for writing, but school won't comply, even though my sister has offered to pay for one.

Thanks for all of your help, I feel much more confident for the meeting now.

Your sister can request a statement herself - check out the IPSEA website

Just apply for the statement. Bypass this sh*t school. Moving sounds like a good option once the statutory assessment ball is rolling. Personally I would be threatening them with the local paper after the 'thought she might die' comment. And I am not a fighter by nature.

Your poor niece, the first thing that struck me in your post was that your Dn has to listen for her name on the register while writing in her book, wtf is that all about. What happened to sitting together to do register and introducing the day??
My Dd3 has ASD and I am pretty sure she wouldnt be able to multi task like that.

Your Dsis needs your help with this, I agree with everything that has been said already. Keep coming on here for advice and help your dsis get things moving forward.

Tbh if it was me, I would be moving her to a more inclusive school. Look around and see if any have special needs units attached to them as they.can in my experience have a much better understanding of inclusion.

Good luck

Record the meeting or take someone who can do minutes. Get them initialled before you leave the room. School sounds like they will lie, cheat and undermine. They might suggest social services, smile sweetly and say you'll chat to the hospital SW (or something equally anodyne). Watch your back at work too, especially if it's the same LA... would suggest calling your union now, just in case. Evil types tend to lash out hard when cornered. And you've very nearly caught them out.

Sorry to sound paranoid, but had a narrow squeak with an institution that was probably no-where near as nasty as this bunch.

It is a different LA. A social worker has already been involved as My niece needed various adaptions when she came out of hospital. We have been promised lots by the school but then it just gets forgotten or not done. Present class teacher was not even informed about her tumour until October. It is like they think that because it was three years ago it has no bearing on her performance now. They say she is lazy and willful, but she genuinely can't do what they ask of her.

Going to go up to my sister's later armed with all your advice and form a plan if attack.

I am absolutely appalled that anyone should not bother with a child's education as they are 'not expected to survive'. I know many children who were 'not expected to survive' who are receiving a good and appropriate level of education both in Special schools and Mainstream school (my daughter included).

I have a friend whose daughter was sent home from hospital aged 3 with a palliative care package put in place as she was not expected to survive for very long. She has just turned 16. She is doing well at a very good girls grammar school partly down to the support she received from her full time statement. Imagine if her needs had been ignored just because no one knew how long she would live. (She has not been cured, she still has the medical conditions that she was expected to die from, but the miracles of modern medicine are responsible for the fact that she is still with us)

Every child has the right to a good education - regardless of level of ability or life expectancy. I would give this school one last chance to shape up at the forthcoming meeting and if they refuse to help, the a change of schools is definitely on the cards.

Good luck.

The thing is, at no point was it ever suggested she would not survive. Not walking was a possibility, but after the initial op there was no suggestion that her life expectancy was poor. She has just managed to ride her bike without stabilizers and I'm so proud of her I could burst. I hate the way school can't see what a special little girl she is.

Have you contacted your local parent partnership servkice? You can find them on the council website, and they may hav e someone to come with you. They will know about sen support the school could do, and how to apply for a statement. Don't ask the paed to apply - get the school or parent to.

AFAIK peads can't apply for statutory assessment. Only parents or an education setting can apply.

Unfortunately this scenario is not uncommon with acquired brain injury. Which is why they call their booklet for educators 'must try harder' , because it is what is written in so many post- ABI children's reports. Sadly, people don't realise that even when a person is medically 'recovered' from the brain injury, there will be consequences educationally in many many cases. That is no excuse for wilfully ignoring a child's clear needs, however.

Agree with contacting parent partnership :-)

Yy, but the paed can write to the LEA requesting it be carried out for x,y,z reasons. It's pretty common. And LEAs, as we all know, take other professionals (except private ones) far more seriously than they take parents.

It worked very well with dd2, and seemed to be a reasonably common thing for the paed to do. As they then routinely get named on the evidence gathering stuff for stat assessment, it's just another route to getting what you need. Loads of different ways to initiate SA, and if the sis is getting fecked off by the school, and has a good understanding with the health side, who recognise the need, then it's a no-brainer. More than one way to skin a cat, etc etc.

I know a fair amount of kids with statements where assessment was requested in this way, including my own.

She sees a paediatric oncologist every three months, and he has written to the school, along with the psychologist from Christies, to recommend assessing her for a statement, but so far no movement. My sister was promised they would start the process in September, but again they haven't bothered.

We have a plan of action now. Listen to what the SENCO has to say then follow up with what we would like to happen. Agree a timescale or a complaint will be made to governors in the first instance, and then the Local Authority.

Who does she see from a developmental point of view?

The letter from the oncologist presumably focuses on her health issues, which aren't in themselves a reason to statement,(health issues are dealt with differently). A developmental paed would be speaking from a development and education pov, and speaking in terms of learning delays and disabilities, and physical impairments that will require support to enable learning.

I don't think an oncologist would be writing in these terms that educationalists would recognise? (Could be wrong. In which case he needs to write to the LEA, not the school.)

Get her to call the IPSEA helpline, anyway. They can advise her in rl.

Just to point out that, even in the case of academies, local authorities still retain statutory responsibilities for SEN assessment and ensuring compliance with any statement. If you get no joy from school go direct to LA and make it v clear you are aware of their stat duties

I am constantly astounded by how awful some schools are. Quite unbelievable that they could be denying her a decent education. So hope you get it sorted.

"She sees a paediatric oncologist every three months, and he has written to the school, along with the psychologist from Christies, to recommend assessing her for a statement, but so far no movement".

Not at all surprised to read that, many schools sit on apps for ages without doing anything and your niece's school is particularly bad. Also it was really no point in this bod writing to the school in the first place, he has no influence whatsoever and this letter has likely been filed. The child's best and only advocate here is the parent.

Unfortunately this school clearly do not want to help your niece and even if there was a statement in place they still would not help her. Your niece ultimately needs to be in another school.

Your sister is better off applying for the statement herself and personally to the LEA asap using the template letters on IPSEA's website www.ipsea.org.uk.

Is it really the case that the class is taught by a HLTA half the time? That in itself sounds unlawful. I suggest you talk to some of the other parents about whether they are satisfied with that with a view to a formal complaint to the governors.