Associació Catalana Síndrome X Fràgil Tel. (+34) 93 217 09 39 e-mail: email@example.com www.xfragil.cat
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Departament d'Educació i Universitats de la Generalitat de Catalunya
2. When do we know our child is ready for learning
Direction: Mercè Bellavista y Carles Fauró Texts: Katy Garcia y Eugenia Rigau Illustration: Marc Isamat Layout and printing: FARGRUP © Associació Catalana Síndrome X Fràgil, 2006 Plaça del Nord, 14 (Col·legi La Salle Gràcia) 08024 Barcelona Legal deposit: B - 8844 - 2007 ISBN:
how and when to use the toilet/potty?
3. Some FXS behaviours we must recognise
4. How to start the learning process
5. Sphincter control training programme
6. Troubleshooting guide
1. INTRODUCTION Sphincter control is a social ability which must be acquired during a child’s development. It basically consists of teaching a child to control peeing and poohing. Learning this ability may prove difficult for kids with Fragile X Syndrome (FXS). Parents will be instrumental and crucial while teaching a kid learn this task.
The aim is to have the kid ready to: recognise the body’s internal signals to urinate and eliminate; and therefore to use the potty or toilet correctly and at the right time. There is no specific age requirement to start. The best time is when the kid shows the first indications that the time is right to go one step up in his or her development.
The premises on which to base our efforts in order to succeed are
It is important to bear this in mind as starting too soon, when the child is not ready, only results in a long and unfruitful battle between you and your child.
- time - understanding - patience. We must remember, as central to this effort, that we are not in a rush to have our kid use the bathroom properly.
This process, however simple it may seem, can be very frustrating for the parents, particularly if it involves developmentally challenged children, like FXS kids.
In order to be successful, we must be: - regular - persevering - coherent So, everyone taking care of a child undergoing toilet/potty training has to follow the same guidelines. Basic premises before starting a sphincter control training programme: - No need to hurry - We will need time, understanding and patience - We must be regular, perseverant and coherent 2
This leaflet aims to make it clear that toilet/potty training can be difficult. We must understand some children will experience great difficulties in acquiring successful toilet/potty control. Knowing the child and taking a few important things into account will ease developmental process of this ability, which is after all, just like any other learning process.
2. WHEN DO WE KNOW OUR CHILD IS READY FOR LEARNING HOW AND WHEN TO USE THE TOILET/POTTY? There is no set age for sphincter control. The best time will depend on the individual development, both physical and intellectual, of each child. Starting the process before 18 months of age may prove difficult as they often don’t yet have either bowel (intestinal movement) nor vaginal control until later. Peeing control comes before poohing, quite possibly because we have more chances to practice during the day. Some signs that our child is getting ready to learn potty training are:
The child can sit upright and maintain the body in this position. The child is dry two hours consecutively during the day, or is dry after waking up either in the morning or after a nap. The child’s face expression or behaviour reveals that he is anticipating internal body signals. That is, the child is noticing something, the body is trying to say something is about to happen. The child is able to follow simple instructions. The child must be able to walk properly in order to reach the toilet. 3
The child must be able to express, either orally or by gestures, that he or she is in needs to go. The child requests nappy changes or explains clearly the urge for peeing or poohing. The child is uneasy when his or her nappy is wet.
The child likes to copy what parents or older kids do. The child likes to go to the bathroom with you because he or she is interested in knowing how to use it. The child wants to do things (like using the potty) which please the parents in order to get recognition.
3. SOME FXS BEHAVIOURS WE MUST RECOGNISE There are certain behavioural traits characteristic of FXS which can be both beneficial or detrimental to sphincter control learning, and it is very important that we are aware of these. Some of these behaviours are:
well identified. It may prove valuable to use visual signals to help the child follow the correct sequence of the string of different steps required to use the toilet/potty properly.
A tendency to be alert to otherâ€™s reactions and to manifest joy when told they have been good or have done well.
Language problems can interfere with the learning process. It may be that they do not fully understand what we expect them to do or the importance of following a routine when a toilet/potty is needed.
They have good copying skills. They are good at learning through observation and imitation.
Sensorial integration difficulties and problems establishing relationships between internal signals can affect learning. That is, there may be difficulties in interpreting body signals as a need to go to the toilet/potty.
The toilet/potty environment may be scary for the child. Some children may be incontinent due to a lack of sensory conscience (low or absent feeling of need to make
Difficulties in organising and ordering sequential information, and identifying the most relevant information.
They show good autonomous abilities. The rates obtained in different measuring scales for adaptive function are good. This is a good indicator of their independent learning capacity.
This may hamper following the sequential steps needed to go and use the toilet/potty correctly.
Visual cues are a powerful learning strategy. Global images (pictures, line drawings or words) are normally
Problems accepting routine changes (nappy change or going to a different bathroom). 5
4. HOW TO START THE LEARNING PROCESS a bowel movement or pee), due to lack of focus, or inability to associate the feeling with the need to go to the
toilet/potty. These aspects must be taken into account in order to help the child during the learning process.
Here are some suggestions which may prove useful when we start potty training/developing toilet use skills: If there are older siblings around, ask them if they will allow their brother/sister to watch how a toilet is used properly, and recognise and praise the user in front of the observing child.
It is advisable to use a potty to ease the learning process. If you want to use the toilet directly make sure the seat is comfortable and secure so the kid feels safe while seated. Sometimes if the feet are above the ground, or not
pooh just after putting on a new nappy, just because they feel it is normal, what they are accustomed to. Should this happen, don’t be angry, don’t tell the child off. This is very important. You may want to
or sign while the child is eliminating (standing up, hiding in a corner, standing still) you may want to offer the potty every time you identify one of these signs. It is useful to choose specific words, and always use the same one to describe the action (e.g. “potty”, “pee” “wee-wee” or “pooh-pooh”). This way the child will learn the words which he can use to communicate his need to go to the toilet/potty. Use a normal tone of voice. Try not using words such as “dirty”, “bad”, “stinks” “disgusting” to describe the urine and faeces.
resting on a step, a reaction may be fear of falling and all the consequent actions of the child will be driven to finding strategies to feel safe rather than the object at hand. The toilet/potty environment must be cosy and comfortable. If the room or the toilet seat is cold it can be disturbing for them. Under no circumstance must the child be fastened to/immobilised on the potty or toilet seat. Children must feel free to stand up at will. Don’t allow your kid to remain seated for more than five minutes. Sometimes children 8
change the nappy and leave the dirty one and place the pooh in the potty or in the toilet, making sure the child is looking at your action. This can help the child understand what is expected from him (pooh in the potty/toilet). Don’t leave the child with a dirty nappy or underwear for long periods, as he may grow used to it and will not find it a problem. This way we would not be teaching him to feel wet or uncomfortable. If your child grows used to always eliminate at the same time (e.g. after meals) you may try taking him to the toilet/potty then. If you notice a particular behaviour
the child will be most motivated to use the potty or toilet. Some children learn by playing with a puppet or being told a story in a book. Try whenever possible to have the child enjoy the process, and not despair, get angry or frustrated if results are not in sight. Using the potty must be part of your child’s routine, starting first thing in the morning, after meals and naps and just before bed-time.
Avoid asking constantly if the child wants to go to the toilet/potty. If the child stands up from the potty or toilet before anything has happened, stay calm, don’t get angry. Leave it as it is and try again later. If, on the contrary, proper use is made, recognise it, praise the action, smile, clap and hug. Children learn by imitating adults and other children. It can be useful to have the kid sit on a potty when someone else is using the toilet. Often kids follow their parents to the toilet. This is the time when 9
5. SPHINCTER CONTROL TRAINING PROGRAMME Sphincter control training programme: The sphincter control training programme is designed to promote the child’s toilet/potty specific habits. There is no magic wand or programme that guarantees success. It is known children with FXS have difficulties acquiring these habits. Some techniques by themselves are insufficient and sometimes it is very hard to acquire these abilities, however there are some strategies have proved very efficient. Children with FXS can benefit from a structured programme to build toilet/potty skills. As with any other learning programme, it is important and necessary to put it to use in all the various different contexts in which the child may find itself (home, school, grandparent’s...) Identify when the child must go to the toilet/potty (what times): In order to determine which is the right time to maximize the probability of toilet/potty use success we can first start a log book. In this way we will probably discover a regular pattern for peeing and poohing, particularly if meals and drinks are always offered at roughly the same time.
establish the elimination pattern followed. It is useful to write down in the log book the times of day when the child pees or poohs. This will be an objective way of deciding when to sit our child on the potty/toilet. We will, in this way, anticipate by five minutes the child’s need and help the kid sit where it should.
Dress the child in easily removable clothes. Elastic waist trousers are easy to pull down. Try avoiding, at the start of the programme, complicated things like belts, buttons, braces etc... It is important to be practical.
Toilet paper. Flush the toilet. Only once (we may have to stress this sometimes).
Programme development Identify the specific times of the day when the child needs to go to the toilet/potty.
The bathroom must be cosy and pleasing to the child with adaptive problems, so he feels at ease. As explained above, we must create a soothing and comfortable environment in the bathroom, taking into account all things which the child may find disturbing or uncomfortable, and try keep i t that way avoiding changes whenever possible.
They learn faster and better through visual cues. Visualising the steps to follow when going to the bathroom with the aid of pictures or linedrawings often helps. For example: Trousers: Pull them down to your knees.
It will be important to maintain mealtimes strictly. We must OBSERVE and LEARN, with the help of our log book, the right reaction of our child’s body.
Anticipate this situation. Take the child to the toilet/potty 5 to 10 minutes before the need arises. Have the child stay there for a while.
Offer something while in the bathroom (read a story, keep the child’s favourite toy, paint...) This can help raise concentration and relaxation. Use visual support.
Pull your underwear and trousers up. Wash hands.
Sometimes it may be useful to keep a calendar in which to put stickers every time the toilet/potty has been used.
By observing the child’s behaviour over a couple of weeks we can 10
You may want to have the drawings/pictures covered in plastic and stick some velcro on the back in order to be able to put them up when required. Each child will have the drawings and sequences needed by them, there will be kids who will enjoy flushing the toilet several times, in this case we will need to specify once is enough. Others will not know how much paper is needed and this will have to be told somehow, as there are kids who take plenty and others who don’t take any. This is important to ensure the child knows exactly what we expect from him at every step of the process. Many of them often interpret literally the world around them and may be incapable of filling the gaps within a sequence, e.g. after using the toilet/potty first pull up the underwear and then the trousers, this can be included explicitly in the pictures.
Use some timing tool (kitchen timer, etc...). Help the child use time as a real measure and not an abstract concept. At the same time the child will recognise it is not the father/mother who decides when the time’s up and that the time span used was determined beforehand. It is not advisable the child remains seated on the toilet/potty for long times. When the set time is up and there’s been no success, don’t worry, repeat the whole thing again the day after or at another time. Reward is very important. Only parents know what can make their child feel great. It may not be a material thing. We can praise the child by hugging, congratulating him, tell him how well he did, etc... At the beginning, if the kid remains seated for the established set time, even if
nothing happens, we must reward the effort to encourage future cooperation. Once toilet/potty routine starts to be normal we can gradually reduce rewards. Reward must not be withdrawn suddenly as it may cause a regression in this habit.
step, the child is more prone to repeat the activity correctly. It is a process which involves a sequence of activities, and this is hard for certain children, so PATIENCE is required on the part of the trainer together with the understanding which all learning processes involve difficulties and take time.
We must find the way the child wants to communicate the need to go to the toilet/potty. This is important to build up independence in this task. Sign techniques or pictures help if there is no language option. This can be an alternative communication strategy but must always be accompanied by language on the part of the adult. Always remember to reward or praise your child, at every step of the sequence, when pulling down the trousers, when seating, etc... When parents are happy at every
6. TROUBLESHOOTING GUIDE The kid is capable of going to the bathroom but he doesn’t. This normally happens because the child does not know which is the right place to urinate/defecate. When we develop the toilet/potty training programme we must ensure all activities are done in the bathroom. In this way the child can associate the place and the activity. If, for instance, the child wets its trousers after a nap, we should change its clothing inside the bathroom. Irrational fear of the bathroom or the noise of the toilet flush. Very many kids are hypersensitive to certain noises, like the sound of a flushing toilet. Playing some music or playing in the bathroom can help prevent their running away in fear. Encourage him to flush the toilet by himself, this can help. If he gets anxious when flushing let him watch the whole flushing operation from the door, and we can slowly and gradually
encourage him to do it on his own. We mustn’t force him to flush the toilet. Fear to sit on the toilet seat. It is important to adapt the bathroom so as to make it comfortable for the child. There are adaptable toilet seats which make them feel safer. It often helps if their feet touch the ground, or a stool or some means of support. We may also check if the toilet seat is too cold for the child, there are seat covers which can make the child feel more comfortable. The child uses the toilet/potty at home but refuses to use it in other places. It is often the case that the child is unable to transfer the information learnt to a context different from the one in which he learnt it. Or a new place may be a source of anxiety to the child as it involves a change in his routine. Whenever possible we must follow the same routine used at home. If we use visual cues, a puppet or a story, then we must carry them with us wherever the child goes. He holds in his and does not want to eliminate. We must find first if the child is constipated, he feels pain when he tries to eliminate, so he avoids doing it. If this is the case, we must talk to our paediatrician and find out what laxative to use and the appropriate dose. A different scenario is when the child doesn’t really know
where he should defecate, then we should encourage him with visual cues, or other communication support which we have used previously. He doesn’t want to wipe his bum with toilet paper. We must find a soft and comfortable toilet paper. If the child doesn’t like it we will have to find another brand with a different texture. Sometimes the problem is the quantity of paper used or unrolling it, we can also try using baby wipes or packed tissues.
It appears his toilet/potty training goes backwards. This may be due to several different causes. Perhaps a change in routine has gone unnoticed by us. The child may be anxious by a novel family situation or something which has happened at
He refuses to wash his hands. Hygiene must be part of his training. The hand-washing step must be included during the learning sequence. The kid gets all dirty, picks up his pooh and touches the walls. This must be controlled, if this happens often we must clearly state that this cannot be tolerated and if necessary we will use visual cues illustrating that he shouldn’t soil the bathroom. It may be necessary to supervise the toilet/potty process and then detect when there are inappropriate behaviours so they can be readdressed. It will not help to leave the child alone for long periods in the bathroom at the beginning of the training programme. If the place is all dirty, we should proceed to cleaning without expressing anger but simultaneously not interacting socially with the child while he is being cleaned. We must avoid cleaning up in front of the child unless he is also participating.
school. If there is a significant regression in his learning, it is important not to loose patience, the best thing is to start the toilet/potty training programme all over again. They don’t urinate or defecate fully. Due to sensory integration problems the child may sometimes experience difficulties in realising the difference between the need to pee or pooh and having fully urinated or eliminated, and they may stand up before they are finished. This will show in very quick pees or a little pooh a short time later. Sometimes 15
a very anxious child under stress will let go and soil his trousers. These cases are difficult to solve. Sometimes it is impossible to address this problem, and ideally this would imply providing a constantly quiet and fixed routine environment for the child, together with a perfectly balanced diet, however we all know this is very difficult. It may also be a response to the child being in a hurry to play or when answering someone and then rushing in order not to waste time in the bathroom. We can negotiate with our child to remain seated in the toilet/potty for a certain time irrespective of whether the needs are successfully satisfied, use a timer and have the child remain seated until the timeâ€™s up.
7. CONCLUSIONS Toilet/potty training may be very easy for some children but others may find this habit a difficult ability to learn and acquire. We must remember every kid is different and this may imply requesting the assistance of a specialist to analyse each case and design individual strategies. We must not teach faster than the child can learn, we must not expect things from our child he is not yet prepared to achieve, or be excessively demanding with his toilet/potty matters. Bear in mind every child is different and he will acquire toilet/potty habits when he is ready. When we decide to start with the toilet/potty learning process we must not forget that we need: NEVER TO BE IN A HURRY TIME, UNDERSTANDING AND PATIENCE TO PERSEVERE To repeat MANY TIMES the same behaviour in the SAME WAY.
It shows parents how to train their children to use the toilet.