wiping sons bottom at school/ how to ask on a statutory assessment

[sawjd]

Hello everyone,

 

If anyone can help on this topic i would be very, very grateful. I am currently filling out a pink form (statutory assessment) that requires me to list what help our son needs at school. Let me first explain and bring people up to date with the situation. Apart from our ks resistance to dress up (school plays), school trips, literacy, handwriting his main problems are with eating and toileting.

 

Our k needs a lot of help in resolving toileting issues and i don't know how or where to begin in specifying what or how they could help our k. Its been a long time since i have been on here and we have had a lot of problems with scans, relapses due to MS and schooling issues. Our LEA refused to give our k a statutory assessment even though the school and LEA knew of our k's toilieting problems.

 

When we took our case to tribunal, the panel (all three people) wiped the floor with the LEA and we won. I felt embarrased for them, still i am angry that they (school )did not ask the local autism unit for advice on this. The school refused to believe me even though i brought in k's underpants completely soiled. I pleaded with them but all they could say was k does not ask them about toileting and does not speak up. So of course the school think there is no problem (even though i showed them) they refused to believe what has been going on. The doctor and the school nurse have been involved and given me a care plan for our k but how can i ask the school to help. The school has recently been taken over with a new head and she has said something about a 'intimate care policy' and she would ask if any member of staff would be willing to help our k. All they have said is that they are willing to stand outside the toilets while our k tries to wipe himself so he would not be worried about other children bursting in while he is cleaning himself. This takes ages at home.

 

 

I try and get him to wipe himself if the amount is small but when its hard and crustatious it takes ages and makes him very sore, so i use nappy cream. When there is a lot there i have to do it. Don't see them doing this at school. His bowel movements are extreme, they resemble shapes going from breadcrumbs, nuggets shaped to what i describe as chocolate mash, he sits in this all day and says nothing. His pants get soiled and at times ,slightly, have come through to his trousers. I change his clothes every day. All the receptionist can say to me is 'well the children haven't said anything about him smelling, ( i change his clothes every day). Its bad enough he sits in it. The amount is the size of the palm of my hand and on occasions my whole hand. He sometimes goes the other way and blocks the toilet in doors at home.

 

I have asked our k about going to the toilet and he says he is not allowed to go during lessons, yet when i have asked the school teachers they have said that he does put his hand up to ask. Not sure what to believe anymore other than k is embarrssed and keeps shouting at me he CANNOT FEEL IT, till it comes out afterwards and he has got so used to it now.

 

We are due to see the paedtrician again (after months and nearly two years of k being on movicol). I cannot get the balance right at all We are due to see him last week in feb but the statutory assessment parents report need to be in this week.

 

What do i ask for ?. How do i ask?. Our LEA have made so many cut backs in the service i was shocked when the evidence came out at tribunal.

 

There are 600 PUPILS WITH AUTISM AND ONLY TWO, YES ,TWO ADVISORY TEACHERS FOR AUTISM IN THE WHOLE BOROUGH. How do i cope with this.

 

Any advice. I am worn out with looking after everybody as my partner is in the middle of relapsing and has his own problems not to distant from our k's.

 

your sincerely (at my wits end) ( i have dyspraxia so sorry if some of this does not make sense)

 

many thanks for reading, with regards

 

sarni

[Tally]

Hi Sarni,

 

I can't help on the education side, but I have a couple of suggestions that might be helpful for your son's toiletting problems during the school day.

 

Incontinence pads could "catch" the mess so it doesn't go on his actual pants. They are much smaller than a nappy and should nt be visible through his clothes, so no one else need know he's wearing it. Then he could change the pad if it's dirty and he wouldn't be sitting on his own mess. All the school need to do is provide one of those sanitary towel bins for him to dispose of the used ones. Even primary schools now need to provide these for the girls, and of course they are necessary for the staff anyway, so it's only a case of providing one extra one in the boys' toilet.

 

You can get wet, flushable toilet wipes, which he may find easier for using to clean himself up than dry toilet paper.

 

If other children coming in is a concern, it might help for your son to be permitted to use a disabled or staff toilet. All staff need to be aware he is allowed to be in there so they don't tell him off.

 

It's obviously embarrassing to have to put your hand up in class and ask to go to the toilet. But your son can be given a card or a special signal so that he doesn't have to say this in front of the other children.

 

I hope you can think of a solution. I'm sure there are others here who can help you make the request.

[chris54]

The toileting needs of children at school are covered by the disability discrimination act. The school must provide whatever help a child needs. If this means employing someone to do this task then that is what they have to do. It is not necessary to have this covered in a statement for this help to be provided, but it cant do any harm if it is.

 

My own son was perfectly OK at preschool but when he went up to primary, it all went wrong, this was before the the disability act had come into force. But even then the school recognised his need, and to some degree catered for it, regularly during the day taking him to the toilet, the staff toilet, he could not cope with the noise etc of the pupils toilet. He always had a spare set of cloths with him at school in case they were needed.

 

As far as what to put in the parent contribution to statement, just state things as they are, what help he needs in school.

Edited February 18, 2012 by chris54

[Sally44]

For the statutory assessment, at this stage, I think all you need to say is that your child has toiletting needs, that he soils himself daily, does not seek help or assistance or even know that he needs the toilet. That his ASD diagnosis would require him to have someone suitably trained to provide this daily assistance throughout the day and that is needs to be the same person to build a relationship and trust between them around this very personal issue.

 

You have the GP/Nurse info/care plan - so submit that.

 

At the Statutory Assessment stage you include a brief outline of what you think the SEN are. It is then up to the LA to ask their professionals to assess and THEY are the people [health and educational professionals] who are supposed to observe and assess your child and write reports for the LA which should include all his needs, and which should quantify and specify how each need will be met in the Statement.

 

The information you found out:

 

"There are 600 PUPILS WITH AUTISM AND ONLY TWO, YES ,TWO ADVISORY TEACHERS FOR AUTISM IN THE WHOLE BOROUGH. How do i cope with this."

 

Is actually quite typical. That is why it is VERY important for parents of child in mainstream schools to find out exactly WHAT the LA can provide. In our LA we have just one autism advisory teacher and she has so many children on her caseload that she can only give about half a days input per child per year. There is no way that this is meeting need.

 

Is your child around average cognitive ability? If he is then probably for secondary school you may need to look at an independent placement.

 

You can go and visit any placement options available, but you are looking for an ASD peer group similar to your child. You are looking for qualified teachers with an ASD qualification on top of their basic teaching qualification. You are looking for a similar cognitive ability. You are looking for therapies and staff on site that can meet his needs.

 

If this toiletting problem is part of a wider sensory processing disorder, then you need that diagnosis in the Statement and you need an OT to state that he needs Sensory Integration Therapy [which only an independent school can provide because the NHS does not fund it].

 

So just get the basic needs sent to the LA now, and let the LA assess. You are a parent. It is not your job to state how his needs should be met. That is the professionals job. So let them do it. And when they provide you with the proposed statement, it will probably be vague and woolly. That is the stage that you lodge an appeal to SEND stating that the finalised Statement does not identify every need in part 2, does not quantify and specify for each need in part 3, is worded in a vague and ambiguous way that is illegal and cannot be enforced. And you can also add part 4 [the placement] to the appeal if you decide that his current placement cannot meet his needs.

[butterfly73]

It would be usefull to get a good assesment of his sensory problems and

a sensory plan to help him get the sensations he needs without too much overstimulation ;-)

 

gooed luck!!

[Sally44]

I just wanted to add that IF you do decide to use independent professionals so that they do quantify and specify, make sure they have experience of Educational Tribunals, and also experience of attending them as expert witnesses.

 

Be very clear about what level of provision they would specify. If it is someone working independently, but who also works for the NHS, they tend to quantify provision within what the NHS typically provides. That is not want you want, and is not what the Statementing process is about. The Statement is about quantify provision to meet the needs of the child, and the cost of doing that is not an issue. There is no monetary limit on what a Statement can provide. But, if your child has a sensory processing disorder, it must specify a sensory integration disorder - otherwise that will not be provided.

 

And if you do get independent reports, you submit them just within the deadline for submitting evidence. This makes your evidence the most up to date. If you submit it too early, it allows the LA to go through it with a fine tooth comb, and gives them time to arrange for one of their professionals to counter assess, and if that happens you could end up with the LA submitting a report which states "the OT report dated xxxxx stated that xxxxx has many sensory issues, however there has been significant improvement since that assessment and xxxxx is now happy and able to tolerate a wide range of sensory experiences." And they will do that to undermine your independent report and make their own evidence the most up to date.

 

And the reason I know that is because that happened to me in 2009 when I used an inexperienced OT and I submitted her report early.

 

However in 2011 I used the same OT [somewhat wiser two years later]. She re-assessed him on all the standardised assessments, and found he had deteriorated further. She quantified and specified naming specific programmes and approaches, and who should deliver it and for how long each sessions should be and how many times a week. That report was accepted by the Panel and that is the level of OT provision he receives - which also includes a Sensory Integration Therapy programme, a programme for Dyspraxia, support in the classroom for his dyspraxia and executive function difficulties, support during playtimes and in PE.

Edited February 20, 2012 by Sally44

[LisaKaz75]

cant help with the support in school, but my 4 year old son has terrible problems with his bowel movements, they go from hard to really soft and nothing that resembles a normal poo

When I mentioned this last time to the paediatrician he referred us to the dietician and although she has not yet managed to improve his diet (though this would help with his poo) she asked us to stop the movicol and try something called optifibre

3 months on this has made a huge difference

It is a fibre supplement, which once you get the dose right seems to bulk when loose and firm when soft. We have found that our son has really benefitted from this as have we. A normal poo is so much easier to deal with when he does have an accident

Perhaps you could look at alternatives to movicol?

 

Regards

 

Lisa

[bed32]

I'm afraid I don't have any practical advice to offer, but I can sympathise with your frustrations.

 

You could almost be writing about our son. We too are just at the stage of going through statutory assessment having initially been refused by the LEA (although in our case they gave in before it got to the tribunal hearing).

 

It seems to us that everyone has given up on his toiletting, no one seems to have any idea either what causes it or how to solve it. He claims he doesn't feel it. A succession of consultants and clinics have got us nowhere. I am convinced that the cause is something related to sensory processing but there seems to be no research on this, and no one to help.

 

I have some sympathy with the school - it is hard for them to deal with - but eventually someone needs to take responsibility and you can't end up with everyone trying to pass responsibility onto someone else, with just the poor parents (not to mention the child) left to fend for themselves.

 

For the statement - I would simply write down everything he needs and don't be prepared to settle for anything less. On the toiletting they really haven't got a leg to stand on. Both SEN and Disability legislation make it clear that the LEA is responsible in this area.

 

If you are not doing so do talk to some of the advisory organisations out there (IPSEA, SOSSEN, NAS and so on) who can give very good advice

[Sally44]

Your son would benefit from an assessment by an independent OT that has experience of writing reports for Tribunals, and also of attending them as expert witness.

 

If he has a sensory processing disorder the OT should recommend a Sensory Integration Programme and should detail how many hours he needs 1:1 OT input for this programme each week.

 

The NHS does not fund Sensory Integration Programmes. But if that therapy is recommended in a report, the LA has to fund it ie. buy it in. Or you use it as part of your argument for an ASD specific independent school that provides this therapy as part of their standard therapy provision. Usually these schools have SALT's and OT's on site.

 

They would work on all the sensory system. But would also have expertise in these toiletting issues.