Parents please help/ am i right or not opinions needed to make decision

[sawjd]

Hello everyone,

 

Our k has been out of school now for over seven months. He is not aware that surgery looms for him at GOSH (fixing a catheter to bowel to kleen prep every/every other day),This can take from 30mins to 2 hours to do.

 

Our k asks me to look to see if he has cleaned himself properly, so at least he is trying but its not always easy. His faeces are extremely sticky (like glue) and it difficult for him but at least he is trying, when its too difficult we have to give in and help him. This has been the case for over two years but before he was refusing to try and even wipe himself. So currently that is the state of his behaviour / medical need. I refer to both as his behaviour led to stool witholding and thus caused constipation. He has been offered OT (just 12 sessions)to try and overcome physical difficulties but what he learns outside in a OT session will stay outside, unless he has been specifically told or SHOWN how to wipe himself properly at school.

 

Other problems are that despite his access to a seperate toilet at school he finds it difficult to be around other kids when he is unsure of a bowel movements as he knows its difficult for him to wipe himself, he is so overly anxious about the other children finding out about his bowel problem, this combined with his refusal to do dressing up, struggles with literacy, school trips. not eating etc. This has been a nightmare for us in the last two mainstream schools. He is trying to help himself but this is because he is at home and not at school where there is time limits on lessons and trying to be quick, bear in mind the school have known about this for two years back in 2010. Its only the last year and half they got round to getting a private toilet for him. Also the headteacher thinks i should do what ever necessary to get him in to school even if that means smacking him (smacking a ASD child). She is (you can fill in the missing blanks) to even suggest such a thing.

 

The school are REFUSING TO WIPE OR HELP WIPE OUR SON, once he has this procedure wash out he is likely to have accidents that he cannot hide anymore or fake illness anymore to avoid being around other children. Statement says he must do this himself, the statement is finalised and we will have to wait another year to change it unless anyone knows how to bring it forward. He will need extra help to assist with a catheter anyway surely.

 

School rang out of the blue and suggests coming to talk to our k, yet they (school) have our email, so why call. I have asked them to email us with their intentions. I have asked if they have staff or their special needs assistant to deal with this type of care. Cannot see how we can manage wash outs yet due to home situation.

 

I believe we are right in wanting/demanding this to be there in the statement, how will he manage without this extra support initially. I am aware he may refuse this help but he won't do what he needs to at school?. A smaller class (relaxed unpressured environment) permanently is what is needed. All helplines closed today and its knowing what to ask for. Statement isn't even one to one hows that for an insult. Done all we can.

 

At least they have picked up the phone and called but with what ?, They knew this procedure was on the cards.....done nothing to avoid it. Same people there. Our k does not feel safe there, so now what ?. k says 'tell them i am not here'. Says it all really. If anyone reading this from the LEA just like to add this, re arrange the following words, its, like the stable, horse, door, bolted, locking, after.

 

Any thoughts, opinions.

 

Best wishes, sarni

[bed32]

Yes, there is no doubt that needs such as this should be included in parts 2 and 3 of the statement.

 

If it is not at present the either ask for the statement to be changed or ask for a reassessment of his educational nees

[Suze]

Things may have changed (I,m going back 10 yrs now ), but when my son was 8 we requested an emergency review .This is when the statement is reviewed and all active parties must be present for it, the statement is reviewed and can be changed accordingly.When was his statement issued ?Usually a review will take place once a yr .

[Sally44]

I don't understand how it got into a Statement that he is to carry out his toiletting tasks, when it is obvious he cannot.

 

If he is refusing to go into school, then get a letter from Clinical Psychology that you should not use physical force to send him in.

 

If his toiletting is improving whilst at home, that is very important. It means that the school environment is part of the problem. Which is what you've always said.

 

You need a letter from the consultant that is going to carry out the operation to detail the kind of medical help and assistance he is going to need in school after this operation. As well as the fact that he will probably soil himself and the impact that will have on a child with ASD and anxiety.

 

At any meeting you have you can take notes and type up the minutes. If they offer anything include that in the minutes. Ask them how they are going to meet his toiletting needs with or without this operation.

 

You could ask for an emergency review. But i'm not sure how long after the finalised Statement you have to wait before requesting an emergency review - so find out if there is a time limit.

 

If his bowel movements are improving at home, would you consider postponing this operation?

[Shnoing]

... His faeces are extremely sticky (like glue) and it difficult for him but at least he is trying, ...

 

Any thoughts, opinions.

Sounds like there may be problems with his diet. Any known allergies?

[JeanneA]

I agree with the others it definitely much be written in the statement as your son is clearly unable to clean himself. You do need an emergency review. I really do feel for him and you.