child with CP and ms secondary school - am I being unrealistic?

[StickyFloor]

dd is currently at mainstream primary. Her Statement is level 8 which means she has fulltime 1-2-1. She is very bright, top of her class and HT says she should sit exams for selective schools. Has some issues with her handwriting, she can keep up but we are all wondering if by secondary she may have to switch to typing so that she can keep up. Currently she gets round with a K-walker and is pushed in a wheelchair for longer distances. We will have a motorised one for secondary so she can manage distances too. Currently she needs her 1-2-1 to help her with getting dressed and also going to the loo.

I think a laptop and motorised wheelchair will fix the key day-to-day issues that she had but the personal care issues are a big worry. Nobody has said anything outright but I get the feeling that these will actually just be a complete deal-breaker and no mainstream school will take her if she can't wipe her own bum basically.

Can anyone advise me if it is as black and white as that?

Also I have heard conflicting things about how she will be supported and even generalisations that is she has fulltime 1-2-1 then again no ms secondary will take her because they can't provide that amount of support.

Is it not the case that the support will be funded on the back of her Statement in the same way it is at primary?

If anyone has any experience with this please can you let me know what you think? Unfortunately I am not sure who else to ask as school HT is also SENCO and is completely useless, lazy and a liar (currently being taken to court by another parent). I don't know any parent in RL whose child has a physical disability but no learnining difficulties, all the other CP families we know have or will channel into the local special school.

Thanks in advance.

Unfortunately, I have no experience in the secondary schools yet, as DS2 is 6yo. But I would have thought that if she has a FT 1:1 that is required to provide that type of support specifically, then the school will need to hire one, and it would be funded by her statement.

I'm sure there will be someone coming along with more experience in this area.

Hi ,
Am out n about at the mo but if you wish to pm me, I have a dd with cp at mainstream secondary (no learning disability) physical but does not have issue with toileting but know of others that have been thru secondary with more severe physical disability than my dd.....

Know a fair few kids with cp that were mainstream, including with personal care needs.

Dd2 is only 9, but because of her cognitive ability, no special school has ever been considered.

Why don't you call the area inco and have a general chat? If the ht is suggesting sitting entry for selectively, this would be a good time to start discussions with them (after area inco) to see what this would involve etc. does dd use laptop etc for SATs?

Dd2 is doing most of her work on the iPad now, (the OT wrote 'will be a laptop user' on her statement for yr r ) just because it is quicker and way more legible.

The secondary would just need to have a care plan in place for personal care on the same way that your current primary does. It shouldn't be a deal breaker at all, but you do need to be opening discussions so that everything is in place and any adaptations (ie disabled facilities with hoist and changing tables as required) can be made well in advance of transition.

Start calling schools and looking round now. But do give the area inco a call. Does your LA have an STA PD? They might be worth a call as well.

Physical disability should not preclude ms, even for personal care.

The funding arrangements for the current statement will just be transferred to the new setting - the funding per se is not something you should concern yourself with - it is the LA's responsibility to work out funding. And don't let them fob you off with that. Money is not the issue, the issue is finding the right placement, and getting the statemented support in place. How the LA pay for it matters not, to you.

Do you have a setting in mind that would suit dd? It is often the case that the LA do have a particular setting in mind for children with PD, as a lot of secondaries are older multi level buildings with no lifts etc, or sprawling campus where it would be difficult to transition between classes in a timely manner. But the area inco should be able to advise.

I would be starting off with the selectively though. If she is academically capable, and keen to maximise that, then don't let them fob you off. Check out the selective's prospectus online, and try to dig out their sn policy. Often it is all there on the website.

if your dd can cope with the social, emotional & academic demands of MS then it is absoloutly the place for her.
Personal care issues are the easiest part to overcome.
Infact i am sure you would struggle to find a SS that is able to meet her needs as she is so very able.

Thanks so much for your responses. I know that SS is definitely not the right place for her but am desperately worried about the things I have heard about ms. It is great to hear of kids who need help with personal care going to ms, I really thought that was impossible.

The main thing I have heard is schools just saying to parents that if a child has "too many" hours in their statement then they shouldn't be in ms which seems ridiculous.

I do still have concerns with the way in which schools can avoid taking dd. For example, looking at those ms schools which on the face of it can take her because they are accessible and have a disabled toilet and handrails in place already. Well, if there is the need for something extra eg a hoist or I don't know what else, can't the school just turn round and refuse on the grounds that it is too expensive and they don't have the money?

I know I have the right to name the school I want, but I thought that wasn't worth the paper it is written on as the school can legally turn her down if it is not in the interests of the other students or the school as a whole, so expensive adaptations are an easy get-out aren't they?

The only kids with physical disabilities that I know of aat ms re all chanelled into one particular secondary school because it is a new build so is well kitted out. It has already been mentioned to me a hundred times by dd's physio, but I don't want her to go there automatically because it is set up for disabled kids if it isn't the one we want.

I don't have any particular setting in mind yet as I have my hopes pinned on the selective school in our Borough. I will check out their policy first and try and speak to their SENCO. Then I will go to the other local schools' open days too as obv she might not pass anyway. I didn't know there was such a thing as an area inco so I will seek them out too.

Adaptations to the environment (eg hoist) would be provided from a separate budget at the LA, not through individual school funding. It is easier for an LA to corral all kids with pd in one setting for budgetary reasons, but makes me a bit queasy, tbh. If dd meets the selection criteria for a selective, she should absolutely be able to attend, and support put in place to enable her to do so. Would they turn away Stephen Hawking? No, they'd cough up the cash for the adaptations.

We went through similar for primary with dd2 - the newbuild was the obvious choice, and had been purpose built to cater for sn. It was actually our catchment school. Dd2 went to a completely different school, which was actually in an old Victorian building which required a fair amount of adaptation. The real issue is the timeline - dd2's OT and physio visited the school with us, for an accessibility assessment, which really had to be done a year in advance, so that the funding application and allocation was done in time for the work to be carried out. They put in ramps and grab rails and whatnot, right down to checking the soap dispensers were at an appropriate height.

Different kids suit different settings. G look round and chat to a few (including the one everyone assumes she will end up at). My dd2 is an individual - I don't want her lumped in an educational box because of a reason that is nothing to do with her educational attainment, and everything to do with saving money and making a box-tickers life easier.

See if you can find a school that is already looking after a child with similar needs. Then the precedence will already have been set.

I know a CP teenager at a mainstream grammar school although her physical needs are not quite at the level of your DD. However she is statemented and receives help with the physical side of things and can use a laptop at times. There should be no need to send any child who is "only" physically disabled to a SS. I hope you can get what you need.

Nice, I disagree. There's nothing wrong in being the first in a particular environment.

The op should be looking for a school that suits her dd, not checking whether there is a precedent to make an application easier.

In some ways, having a completely clean slate and starting from the beginning is very helpful. No teachers or support staff have any preconceived ideas because 'x didn't / couldn't do this / that/ the other'. It's particularly helpful for a child who is one of the brightest to not have to deal with any preconceived ideas about learning disabilities etc, and suffer poor or inadequate goal setting or streaming as a result.

If the dd passes the entrance criteria for a selective, she isn't going to be patronised in this way. Her pd will be just an aside. In any other environment, she runs the risk of her pd being the focus, rather than her educational capabilities.

Children with physical difficulties from our setting have made a successful transition to ms high schools and are thriving. The h's were carefully selected by parents and we worked on an extended transition to ensure that they understood the child's needs. Children and parents involved at all times.

The LA panel will allocate funding to meet needs at high school based on evidence provided in the AR; having a f/t statement should not make a jot of difference as to whether it is m/s or ss.

Do you have a local parent partnership you could talk with? In our locality we have workshop days for parents thinking about secondary.

I would 'assume' she will be sitting the selective exams and push the primary to make sure she's ready. It would be very easy to under-prepare her so that she fails, and can 'only' go to the obvious school. In the current climate, with the CP, she clearly will need a very good education as she might be funding part of her own care needs in adult life.

She would be very well served by a grammar school education and then a sensible degree at a Russell Group university. And I say that as someone who doesn't believe that grammar schools are a good idea .

And personally, I wouldn't mention the personal care needs until after she's got in. Ensuring level access can genuinely be very pricey, and not all schools have the buildings and timetabling flexibility to make every possible subject available on the ground floor. So that's the big issue. A willing LSA, a large toilet/changing area and a portable hoist are just 'reasonable adjustments'.

Thanks for the additional comments.

We are tutoring dd and ds at the moment as that is what all the parents are told we must do as early as possible to get through the 11+. As mariamamma says, my feeling is that she has such obvious disadvantages in life and will face barriers as an adult, that getting the best possible education for her is really important to me to give her some sort of chance. The primary school has terrible academic standards so we are not relying on them to get her through. In fact the HT in the same breath as telling me that dd and ds are the perfect candidates for the grammar then told me that they don't teach to "grammar standard" so we would need to sort that side of things out for ourselves!

Friends had suggested that I do not disclose her personal care needs until as late as possible so a school has less time to wriggle out but I would rather start as early as possible and as openly as possible.

We have had all manner of trouble with primary school even though all was open and willing at the start so i don't want to start with any arguments if possible and make life any more awkward than necessary.

Can I ask another practical question, one that is as valid at home as at school for those of you have have girld with pd please?

At the moment dd is 8.5 and a tiny slip of a thing. She can get on and off the loo by herself, and she can stand next to the loo by herself, holding on to a railing. We wipe her bottom either with her still sitting down or when she is standing facing away from me, holding on to the rail.

I am trying to teach her to do this herself, at least for when she has only done a wee, but I am wondering, when she is older, a teenager and then an adult, how does bottom wiping actually work? Several replies have mentioned a hoist but I never imagined a time when she would need one of those, are you thinking of toiletting?

stickyfloor. I know an adult (20yr old) boy with CP, cant stand unaided and dodgy fine motor skills, he is totally independant with personal care. He has just sort of found a way to manage himself.

His mum says getting himself dressed in the mornings involves alot of rolling around & jigging himself about. I've never asked her about bottom wiping but i know he does it himself.
The only time he has had help with personal care at high school involved a couple of falls in the loo when he needed someone to help him back in his chair.

As for school, find one that best suits her academic & educational needs, they will have to adapt it accordingly.
They MUST make reasonable adjustments under law.

If she is doing her own transfers, then it is unlikely she will need a hoist (can she manage getting in and out of the bath? In and out of bed? ) families with hoists that I know currently use them to facilitate transfer from wc to changing table, etc. if she is using the washroom and is currently managing personal care with some support, there is no reason for this not to be continued. I assume you have downstairs facilities or lift for upstairs access at home?

Has she had a recent OT assessment for toileting supports? If her fine motor will allow her to facilitate wiping, and it is more of a stability issue, then I would request an up to date OT assessment. Dd2 had a three part system (not sure what you are currently using) which had grab rails, but also a removable upper body/ chest support, so she could stabilise her upper body without fear of toppling whilst she was organising herself. In practise, dd2 prefers to stand to wipe (she's 9). There are tons of toilet supports available though, so it might be that you need an upgrade to facilitate independence? Before dd2 was stable, we found it easier for her to secure herself with her back against a wall and a second angle (ie grab rail or second wall with grab rail) in order to give herself a hands free opportunity for self care.

Where there's a will, there's a way, and all that.

If you find a way that works independently for home, this can be replicated in the school environment.

I know of students who use a turning disk thing (not sure of exact name). They stand on it from wheelchair and then assistants push it around so that they are in the correct position to sit down on the loo.

OP -- re the toilet issue, lots of people with cp use a Close o Mat toilet which basically does the washing and drying automatically www.prismmedical.co.uk/products/clos-o-mat-toilets. Note the loo, whilst expensive for a school to install, can be used by non disabled people in the normal way, so is not necessarily a one off 'special' purchase.

On the education issue, don't know if my son's experiences will be useful to you. He has CP, uses K walker, can't dress himself, needs help with eating or drinking, impaired speech, very wobbly. He was the first child with his level of physical disability to go to a local ms primary, where the staff and head were very supportive and prepared to do a lot of learning on the job about how to handle his needs. He had good experiences, although school was probably not as academically challenging as he needed -- good for learning social skills, though.

When it came to secondary, we specifically went for a school with previous experience of including students like DS. We wanted DS to be able to achieve academically and be concentrating on how to do this, rather than having endless discussions with a school which had never had a student like him about how to manage school lunches, transfers between lessons, how the laptop would be used, what the TA would do etc. For example, the school was big but had automatically opening doors and a lift, and had already worked out that DS would need permission to leave lessons a few minutes before the end so he could get to the next class without being killed in the rush. They also had a table in the canteen at lunchtime where students who needed help with food cutting up/feeding could sit with some helpers. (In fact DS soon decided he was having none of this, and got his mates to give a hand, but useful that the systems were already in place in the early days).

I certainly would not recommend witholding information about your daughter's support needs, as this will just mean she's left to sink or swim in a big school from day one. I would be looking for a school which was welcoming but realistic. For this reason, I would be asking some very detailed questions of the grammar school, including what adjustments they will make so she can take the entrance test with the same opportunities to succeed as other applicant, and how they will support her academically as well as meeting her care needs.

Our experience may not be typical, because we do not live in an area with lots of grammar schools (Kent). We are in inner city London where there is one prized grammar which everyone tries to get into. DS is highly competitive by nature, and with straight As and A*s at GCSE was offered a place in this grammar school's 6th form. The school were reluctant to meet us to discuss exactly how they would support him as they thought they could just work it out when he arrived but we did eventually force a meeting where it turned out a) the SENCo was a fairly new and junior member of teaching staff and only did the role p/t and knew very little about students with physical disabilities (their small disabled intake was largely students with dyslexia or autism and most of their support was focused on developing organisational skills); b) rather than having a TA take notes for DS in lessons, they felt this 'would be disruptive to other pupils' as DS would direct the TA as to what to note and his speech is quite loud and distracting, so suggested DS simply take a photocopy of another student's notes (they could not begin to see why we objected to this); c) the grammar also said they would be extremely reluctant/unlikely to apply to exam boards for extra time for DS in exams because he dictates answers because 'giving him extra time would be unfair on the other students'. (DS is very good at using the laptop but because of poor hand function his typing speed is very slow with a lot of errors, so frustrating when he needs to get ideas down, hence the dictation. Extra time in exams for disabled students who can make a clear case for this is fairly common).

DS realised he was basically being set up to fail, so turned down the grammar option and stayed at his previous ms comp, where he achieved top level A levels, and got a place at an Oxbridge college from which he has just graduated with a 2.1. Incidentally, the college and university were far better at meeting his needs -- the grammar was definitely very hung up on being 'selective' rather than inclusive.

HTH

Ancient thanks so much for that post - I am so so happy to hear of your son's academic success. I have these aspirations for dd, and sometimes I wonder if I am living in a fantasy world, so it is wonderful to hear that a clever child can succeed, regardless of SN.

I wonder if you may actually be in the same borough as me - we have one girls' and boys' grammar in Bromley too and they are naturally very hard to get into as there is just the one each. A friend who has just been through secondary transfer knocked me today as she said there is no point in dd sitting for the grammars in neighbouring boroughs as she will be put down the list due to funding issues, so I need to check that out. If that is the case then things are very sticky as it narrows her opportunities for a selective school. I have so many things to ask the grammar but first and foremost is accessibility. I have a feeling it is not fully accessible, in which case I wonder if we're screwed.

I have never heard of the clos-o-mat, it looks amazing. But I find it hard to believe that the LA would pay to put one of these into a ms school at that price. Can I ask how you got one at home? We can't afford it, and given the row we had to persuade them to put in a few handrails, again, I don't see how we could ever have one at home!

Luckily we have an OT assessment in January so I will ask some questions about what practical support then can provide to move this on. I am still not sure if it more of a stability issue or if she just won't have the dexterity anyway.