Total devestation

[Viper]

I got a letter today saying we were not accepted. I cried. I feel totally devastated, it was my only hope left open to getting Ben toilet trained and eating more. I really don't know where to go from here.

 

Every other avenue has been explored, even Guys hospital couldn't help. I don't know what to do now.

[mossgrove]

Viper

 

I'm so sorry, I had been keeping everything crossed for you.

 

<'> <'>

 

Simon

[Tylers-mum]

I'm sorry hun.

<'> <'> <'>

 

Is it worth writing back or calling them and pleading with them that this is your ONLY hope. Maybe if you show how devastated and desperate you are, they may reconsider??

 

Thinking of you hun. <'>

[DaisyProudfoot]

What a shame, it must have hit you hard - I've even been telling the kids that we're to watch out for you on the programme.

 

Why don't you cry down the phone to them and get across to them the desperate situation you are in - they seem to like parents who cry.

 

Dr Tanya isn't the only person to solve problems though why not ask your health visitor if she can recommend anyone.

[Viper]

Daisy I have been down every avenue. Ben no longer has a health visitor, he is too old.

[mel]

aw viper, im so sorry <'>

[adamsmum]

Thats reely sad news. Iv no segestions on what to do next but i hope you do find somone soon <'>

[justamom]

Ah, Viper i am so sorry... Could you not ask to be put onto a cancellation list or something, because like on sunday night the little boy got chicken pox and a new lady came into the house so they must have people on standby????

[Paula]

<'>

 

Im so sorry viper.

 

I might sound a bit daft but how old is youre son and whats the issues around his toileting.

 

I know i could trawl through all the postings but this is quicker.

 

I only ask because as you may know my son has major toileting issues surrounding poo and toilet paper.

 

If you dont want to go into it its fine.

 

take care.

 

Someone somewhere must be able to help.

 

I once emailed tony attwood to seek advice on my sons toileting issues.I didnt get a reply.But i was more successfull with some institute based in america.They were heplfull cant remeber what it was but it began with K

[Viper]

Paula. Ben is 5 1/2 His problems with toileting are that he has never poo'ed on one. He only poo's in a nappy. He only wee's on our own toilet (except for Saturday, when we had a breakthrough and he wee'd in a public toilet for the first time)

 

As for his eating, well what eating, he only eats about 6 things and they are all bland carbohydrates. It has got steadilly worse over time.

 

I just feel like everyone has a look at his problems and makes the same stupid sugestions and then they wash their hands of the problem. No one wants to help. I really don't know what to do, my son is going to poo in a nappy for the rest of his life.

 

All I want to do is help him, why can't anyone do anything?

[rainbow queen]

oh noooooooooooooooo

sorry to hear that was hoping you would get on tv.

[Paula]

Viper

 

My son was still pooing in his bed at 6 years of age and wetting it.he was dry through the day and i had removed him from nappies mainly coz of the cost i thought its cheaper to wash undies.

 

Id find him lied in cr*p and pee to be blunt totally oblivious but with the room stinking.The sheets ive changed and chucked at midnight.

 

He will wee on a toilet but literaly holds on untill hes in as he puts it agony.I know hes gone a long time between wees because his urine stinks to high heaven.

 

Has for the poo part.Well.

 

He hates haveing one,Hates sitting on the loo hates toilet paper and can go for weeks with anal leakage ect all his stomach bloated.

 

Recently we had a much needed breakthrough and hes 12 !!!!!!!!!!!!!!! He will touch the paper and wipe his own bottom although he gips and screws up his eyes ect but its a start.He still has to be forced onto the loo and will scream at me.But its a start like i say.

 

Have you tried cutting a hole in the nappy so the poo drops through it and he feels hes wearing one.I bet you have daft question.

 

There is a book and i bet youve read it on training autistic kids.

 

My son also had a very limited diet he would live on porridge for months at a time.He hates things that melt,or are crunchy.It was a nightmare.I worried contantly.I used to shove multi vitamins in his milk something he would drink.Hes know a strapping 12 year old who eats me out of house and home although still is a fussy eater.But hes survived.

 

 

No one ever took my poo issues seriously or the toilet paper saga and it became entrenched.Just dont know where to turn.

 

The fact hes sat on another loo that isnt one you use at home is a breakthrough it means he can do it.We dont understand the fears they have or how powerfull they can be.Hell do it eventually im sure.

 

Someone once said to me its small steps but they all get there ventually.

 

The road seams a ###### long one though at times and i wouldnt mind bloomeing getting of the journey.

Edited May 10, 2006 by Paula

[lizzie]

Ahh Viper im so sorry to hear your news! As the others have suggested, why not contact the programme people again and ask them to reconsider you and Ben, in my experience, whenever I apply for something and get turned down (DLA for instance) the first time, I always ask to be reconsidered and usually end up with the right decision, I know this isnt the same, but its worth a try, you never know, if you ask to be reconsidered and they see how much it means to you and how desperate you feel they might change their minds....... I do hope so. Good luck, wish I could be of more help <'> Lizzie xxxx

[mossgrove]

Viper

 

I'm sorry if I have asked this before, but when Ben has a nappy on to Poo, do you make him stay in the bathroom/toilet while he has it on, or does he wander about with it on for a while?

 

Simon

[Suze]

please don,t get down hearted about not getting on this programme. Ben made a huge breakthrough this week, he will get there eventually, you have to believe that, it will happen,he,s done a wee once on a public loo , he,ll do it again.My son still drank from a babies bottle when he was 6 , I was ashamed of this and tried and tried to stop it.Eventually he did it , he had to be ready .Don,t be goverened by what you think and know ben should be doing, our kids do things at their own pace.Don,t let this get you down hun , my son currently lives off cereal,pizza, yogurt and bacon.Try as I might I can,t entice him to eat veg or fruit.........even a smoothie.It gets me down too I should be a better mum and be able to feed him nutritous food, thats what parents do , it feels real bad when you want to help and give them the best and your not able.But please don,t get down about it .....ben will do it eventually <'> <'>

[lindy-lou]

Aw sorry to hear that viper <'> must be awful if you had pinned your hopes on it,did they give you a reason for turning you down?I think paula's advice is very good,im sure it will happen in time,and going for a wee in another toilet is a huge achievement on the way there,Try not to be too downhearted about it x

[nellie]

Viper, <'>

 

I'm sorry you feel disappointed. I have to agree with Suze, autism is a development delay, he will get there in time, he's proved he can do it. Did they give reasons why you weren't accepted? It may be that they realise their methods may not work with a child with autism.

 

I understand your frustration, I've been there and still am to a certain extent.

 

Nellie xx

[Kazzen161]

My son was late being dry too. He would only wee in a nappy until he was about 4, but he went to playgroup in pants and never had an accident. One day he went off into the bathroom , shut the door, and wee'd on the toilet. He never used a potty, and has never had an accident since. It took him many years before he would use the toilets at school or when out. He was 7 before he was dry at night, but again one day he just was, and never had an accident since.

 

Health Visitor's cover children of all ages - I got help from mine when R was 10 and very depressed. She visited us and got him bumped up the list for the psychiatrist.

 

Karen

[Bagpuss]

Sorry to hear that Viper <'> <'> <'> Can you reapply after a certain amount of time or does the refusal stand ?

 

Our daughter very late toilet/potty training. Shes 5, and only after her 5th birthday did we crack it.

 

Debs x

[Viper]

Viper

 

I'm sorry if I have asked this before, but when Ben has a nappy on to Poo, do you make him stay in the bathroom/toilet while he has it on, or does he wander about with it on for a while?

 

Simon

Simon, when He brings me a nappy he goes out into the utility room and has a poo straight away. He won't stand in the toilet.

 

Paula, thank you for your advice it all helps. I forgot to mention that Ben only wee's standing up. He never sits on a toilet.

 

I rung the show and asked them what would happen to my application. The lady said it would stay on file and if I want she will put it back through for consideration again. I am not holding out much hope though as she said it is medical problem not psychological. And that they have to be able to sort it out in a week. I pointed out, through my sobs that it was psychological as he can poo but just not on a toilet, there is nothing medical about it, he has a mental block. She said they sort out sleep, eating and behavioral problems. I told her Ben has eating problems and behavioural problems, he scratched a lump out of his sisters face a few days ago and he hits me and everyone else in the house. I don't know what more I can do to convince them.

[Viper]

Health Visitor's cover children of all ages - I got help from mine when R was 10 and very depressed. She visited us and got him bumped up the list for the psychiatrist.

 

Karen

 

I asked my health visitor for help when Ben reached school age. She said he was not on her books anymore as he was under the school nurse now. And a fat lot of good she is. She told me that Ben was no longer on her books when I withdrew him to home educate.

Edited May 10, 2006 by Viper

[openyoureyes]

HI Viper

 

Sorry to hear your news, but I was reading how old your son is, Tom has just turned 6 and he too had the same problems, not poohing on the toilet but only in a nappy, he would wee but even when sat on the toilet and read too for ages still nothing. However, I went to see my GP who put me in contact with Toms speacilist at the hospital. He put Tom on some medication - Movocol and some senna which made him more loose, from there we have now started him on Laxoberal, again this is another stimulant for the bowel.

 

He has now been on medication for probably 6 months, at first we did not even contemplate trying the toilet till he felt happy in himself, as his stools were a lot softer and happening every day, even twice some days.

 

We then borrowed a bit potty from a friend whos son was the same. It was a slow start but we put the potty in Toms bedroom (where he feels safe), at first he just sat on it with his nappy on and did a pooh then after a few weeks we sat him on it with no nappy to see if he would do anything. We left him on his own with his books and magazines and yipee he actually did a pooh, not much just a spot but it was a start. From there he has gone from strength to strength, we do not mention him wanting a pooh anymore, he just goes upstairs does what he has to do then shouts us. We are still using a chart for him to move Thomas up the tracks if he does a pooh, we started with 30 sections of track now he only has 5 more to go, then he gets his reward (Another train for his set).

 

I could not believe that at last we seem to have cracked it. The incontinence nurse has been visiting us, we got her from the hospital but to be honest she only told us to do what we already had tried.

 

The thing that seems to have worked the best is the little magic toilet in his room, I know its not that hygienic but what the hell. Tom knows now that he cannot have a nappy on anymore, unless at night but he still does say if he has an accident that it doesn't matter. He still soils his pants quite alot but I think that is to be expected at this early stage.

 

My parents also said once he never poohed in his nappy again they would take him to see the big steam engines in the Isle of Man so again that was another boost for him to get going.

 

Hope this helps, I know what your going through and it seems never ending, wiping and disposing.

 

Good luck

[jools]

so sorry viper <'> <'>

[Kathryn]

Viper,

 

Sorry to hear you didn't get on the programme.

 

I haven't any advice to give on this particular situation - just wanted to say, don't give up hope. Ben did really well going to the loo at MacDonalds a few days ago, so I hope this gives you a bit of encouragement for the next step.

 

<'> <'>

 

K x

[helenl53]

Viper - this may be daft question - but do you think Dr Tanya would consult privately or if she has a practice, could you get a referral.

 

Sorry I don't know anything about her.

 

Oh poor hunny

 

Love

 

HelenL

[jayjay]

i am so sorry that you havent got on the show i would go to the doctors and refuse to leave till they sit down and really listen to your and Bens needs and if you get no joy demand another doctor, make their lives hell until they have no choice but to listen. sorry i dont have any advice other than that but my heart goes out to you

jayne xx

[Guest flutter]

found this may help tp try this

<'> <'>

http://women.timesonline.co.uk/article/0,,...2124387,00.html

[Kazzen161]

>>>I asked my health visitor for help when Ben reached school age. She said he was not on her books anymore as he was under the school nurse now. And a fat lot of good she is. She told me that Ben was no longer on her books when I withdrew him to home educate.

 

You could try calling your local PALS (Patient Advice and Liaison Service) - they can mediate on your behalf to sort out who IS responsible for helping you.

 

http://www.dh.gov.uk/PolicyAndGuidance/Org...nServices/fs/en

 

Karen

[westie]

Viper I am so sorry you were not accepted. <'> <'>

My son who is 7 still h as issues with poohing on the toilet (does not use nappies just holds it in so long that the soft stuff leaks into his pants - a couple of weeks ago I found about 12 pairs of pants hidden behind his bed that he had hidden because they were soiled and he knows we keep asking him to go to the toilet.

 

I hope you find someone to consult about the issues - I think seeing your GP would be a good idea - they may be able to refer you to someone who can help (though keep trying the house or what about little angels - I remember reading a post from someone who had been rejected for one programme but accepted on the other (Debbie?)

[Bullet]

I am sorry you're so upset. But could you maybe write again and say that if you can't go on the show, whether Dr Green would be willing to write down an itinerary of ideas for you to follow? That way you'll get some help at least.

[elainem]

Viper,

 

really sorry you didn't get on.

 

My ds was the same woudl only poo in a nappy. I 've posted about this before but at the time the only thing that mattered in my life was that he did a poo on the toilet. Under the psychiatrist guidance we had a planned programme of sitting on the toilet with a sticker chart on the door. One sticker for sitting, another for pooing and a big sticker for volunteering to go. It took ages but it WORKED. we had to sit him every morning and evening. If Ben would co-operate why don;t you give it a try, I cannot beleive it when look back - I would never have believed my son would take himself off to the loo for a poo but he does. No fuss, nothing just does it.

 

It is the most horrible thing to go through and I feel for you but he will get there in the end.

 

Elaine

[CarerQuie]

I am more or less sure that all special needs children remain under the care of a health visitor until they are 16.My son is 8 and we still have a health visitor.xx

[UltraMum]

I am more or less sure that all special needs children remain under the care of a health visitor until they are 16.My son is 8 and we still have a health visitor.xx

 

You're right - Health Visitors care for NT children under 5 but have a role in the care of children with disabilities until they are 16

 

Viper - contact the GP or surgery and ask for the health visitor to see you ...

<'> <'> <'>

[Viper]

You're right - Health Visitors care for NT children under 5 but have a role in the care of children with disabilities until they are 16

 

Viper - contact the GP or surgery and ask for the health visitor to see you ...

<'> <'> <'>

 

Does that count if your child has no DX? He's still NT in the eyes of the NHS.

[mossgrove]

Simon, when He brings me a nappy he goes out into the utility room and has a poo straight away. He won't stand in the toilet.

 

Sorry to labour the point, but when you say he won't stand in the bathroom, did you do things to make being in the bathroom more pleasant for him?, e.g. interesting posters on the wall, special toys, singing, his favourite books, a cassette player, a gameboy, lavish praise or whatever works for him. Without it, he has no reason to want to be in the bathroom, and the fact he resists change is entirely understandable. Even getting that far over a period of a few weeks would be a massive step forward.

 

 

Simon

[OPooh]

Can you not see a clinical psychologist through the doctors? My friend's daughter used to do poos in her pants and wouldn't tell anyone/take them off and eventually they saw a clinical psych and it got sorted.

 

Sorry to hear <'> and good luck with it all.