Jane Smith’s eight year old son, Daniel, had never been dry at night and Jane found it hard to cope with the constant washing of bedding and all the extra costs that bedding incurred; the whole situation was really getting her down.
She had been to see her GP, but he wasn’t very concerned and said that Daniel would ‘grow out of it’. In desperation, Jane had been waking Daniel up in the night to take him to the toilet in the hope that this would stop the wetting - but in the morning the sheets were still wet. She was really frustrated and exhausted and felt she had no one to talk to, that no-one understood what she was going through.
Call the ERIC Helpline
At her wits end, Jane searched the internet for information on how to deal with bedwetting, on finding the details about ERIC, Jane phoned the ERIC Helpline. It was such a relief to talk to someone who understood what she was going through and could offer practical help that Jane broke down in tears.
The Three Systems approach to bedwetting
The Three Systems approach to bedwetting was explained, and Jane began to realise that bedwetting was something that Daniel could not control and that there were ways to help manage and/or resolve the problem. Being equipped with more information made Jane confident enough to return to her GP and ask him to refer Daniel to a local enuresis clinic, the details of which had been provided by the Helpline from the ERIC Clinic database.
Bedwetting, now a dim memory
A few months on, and Daniel is dry at night, the stresses of dealing with bedwetting all seem a dim memory! With the support of the local enuresis clinic, and through regular phone calls to ERIC’s Helpline for support, Jane was able to successfully work through the strategies that resulted in dry nights.
ERIC alarm ‘worth every penny’
Daniel used a bedwetting alarm which enabled him to train his system to recognise the signal between the bladder and the brain, and to hold on and wake up when he needed a wee. The clinic were unable to provide an alarm for Daniel to use immediately as they were all out on loan, but Jane felt she couldn’t wait so she purchased one from ERIC; she informed the sales office on her feedback form that the purchase ‘was worth every penny’.
The alarm did not provide a miracle cure for bedwetting but needed both Jane and Daniel to remain focused and motivated, and although sometimes it seemed like progress was very slow and there were many weeks of interrupted sleep, both agree that it’s been well worth it.
Sleepovers and school trips
Now Daniel is free to go on school trips without worry, and his friends have noticed a difference too – he says ‘yes’ to sleepovers! Jane herself cannot believe the difference dry nights have made to her life and says that both her stress levels and her purse have felt the difference since contacting ERIC.
Toileting issues can be a real challenge to the parents of children with special needs – and patience, routine and optimism all seem to help! Heather Welford spoke to Linda, whose daughter Kathryn is now aged 11.
‘Kathryn seemed to have difficulties from birth – she had a weak suck, and couldn’t lift her head, and just didn’t do the things newborn babies should be doing,’ recalls Linda. ‘She was my second child – her brother Christopher is now 16 – so I had some idea of what a baby could and couldn’t do, and it was clear to me there was a problem.’
Series of tests
The doctors agreed, and a series of tests showed the first of several problems – this was Chiari Malformation, which is linked with fluid on the brain, though it was not clear what had caused it. As time went on, Kathryn’s development appeared very delayed; she didn’t sit up until she was almost two, and she didn’t take her first steps until she was three. It later emerged she was on the autistic spectrum, and she has a number of skin problems, plus epileptic absences.
Kathryn’s condition – still not fully understood – means she has learning difficulties, and Linda values the progress she makes at her special needs school. ‘She sang all the words to the song at the school concert. I was so proud of her. She enjoys her life so much, and she’s always smiling.’
The difficulties in comprehension and communication have meant that teaching Kathryn to use the toilet has been slow. ‘The biggest mistake I made was to follow what the health visitor told me, which was to start training when she was two,’ says Linda. ‘We got nowhere at all, and she was still in nappies all the time when she started school.’
Toileting programme
Linda talked it over with the paediatrician looking after Kathryn’s medical needs and she was advised that the way forward was to prompt Kathryn to use the toilet at frequent intervals. The idea of an alarm was considered, but it was thought to be too intrusive. Tests have shown Kathryn has a small bladder capacity, and is therefore likely to have a physical need to visit the loo more often than most people.
‘In the end we decided with the school that we’d take her to the toilet every hour or every hour and a half. Kathryn doesn’t mind being wet and she only rarely decides herself she wants to go, so we say, ‘Kathryn, it’s time to go to the toilet’ and she goes.’
Linda says this works better than asking Kathryn if she needs to go. If asked, Kathryn will sometimes ‘test’ herself and then can’t stop the flow, so making it a routine visit results in more dryness.
Using the loo frequently is now part of the daily routine at home and at school. In addition, Linda and the teachers ensure Kathryn drinks plenty of water. In total, Kathryn has 1500 ml of water per day.
‘This programme means she is dry most of the time,’ says Linda, ‘and she is usually ok with poos as well.’
Kathryn is likely to be in nappies long term at night, but her paediatrician believes that in a few years, she will be able to be more independent about all aspects of her toileting. She does sometimes use the toilet independent of the routine, and Linda has seen progress over the years.
‘Overall, she has really come on,’ she says. ‘I was told at one point she would be unlikely to walk and talk – and I say that not only is she walking and talking, but she’s singing and dancing!’
Family support group
Linda is an active organiser with a support group for families in her area (Ipswich) – the Positive Parents Posse offers activities for the children, plus information and regular meetings for parents. You can contact them by email by clicking here.
Claire is a nurse, an incident with her own family led her to realise that schools are sometimes unhelpful when it comes to exams and the normal needs of children to use the toilet.
No exit
Imagine the situation. You’re a teenager sitting an important exam – and you realise you are desperate for the loo. You try to ignore the feeling, but it won’t go away.
You ask the exam invigilator for permission to leave the exam room, but it’s refused. If you leave the room, you can’t come back to complete the exam, and that’s that!
This happened to Claire’s son, Harry. ‘He has very mild learning difficulties, though he is in a mainstream school,’ says Claire. ‘He ended up wetting himself, which he coped with fine, but I was concerned he was driven to this, and wasn’t able to use the toilet when he needed to. I thought of my daughter, now 12, and realised she would probably have gone to the toilet anyway, but then of course she would risk failing the exam.’ Claire also thought of the embarrassment and stress some children would experience, ‘hanging on’ in severe discomfort.
‘I took it up with the school, and they told me this was a point insisted on by the exam boards but any pupil with a medical condition and a doctor’s note confirming it would be permitted to leave the room to use the toilet and come back again,’ says Claire.
Claire did her own research on this, and correspondence with the exam board revealed the decision was solely the schools. She told the school’s examinations head of this, and also raised the point that anyone could need the toilet at any point, just as Harry did – needing ‘to go’ isn’t restricted to people with a medical condition.
‘I was concerned for Harry, of course, but also taken aback by the way the school said all students were informed of the rule, yet there was nothing on the two sides of A4 of exam rules distributed by the school that said anything about it. I realised they needed a change in policy,’ says Claire.
Medical permission for toilet breaks
Since the incident, the school has apologised and now gives students the option of having a small card on their desk, which states ‘medical permission for toilet breaks’.
This has satisfied Claire, but she feels other parents might want to check the policy at their own children’s school. ‘I know it can be difficult for schools to arrange for someone to accompany the pupil, to ensure there’s no cheating, but I do feel it’s essential they have some way of overcoming the problem.’ Claire says Harry experienced no teasing or bullying, because the school and its students have always been understanding and supportive of him. ‘But that might not have been the case in another, tougher, school,’ she says.
On Sunday I heard the appeal on Radio 4 for your charity and I sat and wept.
My story is awful, and for your records I thought I would relate it to you.
I was born in 1953 and as a little baby I went into care. For the first five years of my life I was in and out of the orphanage, switching between natural parents, foster parents and the orphanage.
Finally, at the age of five in 1958 I went to long term foster parents who lived on a remote farm. They were abusive people and I wet the bed I can truly say, virtually every night from the age of five to about fourteen.
My foster mother used this as a stick to beat me with from day one, completely humiliating me. I had to sleep every night in wet things from the night before and my pyjamas were changed only once a week. We had no mains running water so I bathed infrequently and I knew I smelled horrible. She told everyone I wet the bed. I had a room to myself. Every night I was locked in the room and had a pot which I never used anyway.
When I got home from school, winter and summer, I was not allowed to have anything to drink. Therefore I used to go in the barns and drink the animals' water. Sometimes the family would have chips, but I was not allowed any as she said they contained water. I felt unwell on hot days and always went to bed very thirsty. There was a brook on the farm and I used to drink from that sometimes.
Eventually, they moved away from the farm, but my foster mother continued the humiliation, she used to take me into baby shops, I was then aged ten, and ask the assistants if they had baby pants to fit me as I wet the bed. At one stage the assistants got cross with her and told her to go away.
Then she had the idea of making me nappies out of old towels and she used to make me pin them before I went to bed. She used to make me wash my sheets in a bucket outside in all weathers.
At the age of about fourteen or fifteen I gradually stopped wetting the bed.
Leo began soiling when he was four after having been successfully toilet trained when he was two.
His mother took him to the GP for an assessment and when constipation was diagnosed, laxatives were prescribed. The laxatives worked for a short time and then the soiling returned. For the next two years the soiling continued, occurring several times a week, Leo would sit in soiled underwear without telling anyone or doing anything about it. He didn’t seem to know what was going on.
Leo’s parents found the soiling problem frustrating and extremely difficult to cope with and would sometimes get very cross with him; the stress of dealing with soiling on a daily basis also began to affect his parent’s relationship.
ERIC
It was a couple of years before Leo’s mother heard about the ERIC Helpline, but when she was aware of it, she quickly made contact. It was such a relief to finally be able to talk about the problems and the stresses involved in dealing with a child who soiled on a daily basis, to finally have someone who understood the problems and could provide support and offer practical solutions.
Regular toilet times
Leo’s mother was encouraged to create a regular, relaxed time to sit on the toilet every day, about 20 minutes after a meal. He was to sit on the toilet with his feet supported for a maximum of five minutes, and whilst he was on the toilet, rocking and blowing games would help bowel movement. The Helpline suggested setting up a reward system to positively reward good behaviour.
Soiling gradually decreasing
Over a period of several weeks and many calls to the Helpline, the soiling gradually decreased. With support from his school and his parents, Leo began to gain confidence in his ability to manage the problem when it occurred. By the time he was ready to move up to junior school, Leo and his parents had conquered the problem, with only the occasional soiling accident during times of stress.
Gradually Leo’s parents were able to dispel their concerns that they were bad parents and had done something wrong to cause the soiling, and accept that the soiling was not within their control. His parents thought that paradoxically, in the end, the problem brought the whole family closer together, making them more open and able to discuss things together.
Younger siblings were potty trained with a much more relaxed attitude than Leo was, without any problems. His parents were grateful to ERIC for providing a listening ear and practical information at a time when it was really needed.