While many people with a cleft report that they had a wonderful time in school, it can also be the peak age for teasing and name-calling, and for children who look or sound different this can be especially difficult.
As well as comments, staring and unwanted questions, children may have to deal with multiple absences due to hospital appointments and worries about operations or bullying. Feeling different to their peers can result in low self-esteem, which can in turn give children behavioral problems and difficulties making friends.
There are particular times when a child with a cleft may be more vulnerable and in need of support, including times of change (moving up in academic year or changing schools) and before operations.
It is important to remember that many children with a cleft do very well at school and do not need additional support. It can also be the case that children face difficulties which have nothing to do with their cleft. This section lays out some of the issues that a child could face at school and what can be done to help.
In This Section
The Clinical Psychologist with the Cleft Team can use playing and ‘talking’ therapies to help children feel better, behave differently, or think in a more helpful way. They are not psychiatrists and do not prescribe medication, they are cleft specialists who understand the specific support needs of people with a cleft and their families.
Treatment will vary from child to child.
First, there will be an assessment where you and your child (and other family members where appropriate) will be invited to meet the Clinical Psychologist so you can all get to know each other and explore any issues in a safe environment. This may involve questionnaires, and the Psychologist may need to contact your child’s school.
Next, the Clinical Psychologist puts all this information together to try and understand what is causing these issues.
Finally, the Clinical Psychologist decides what kind of therapy is likely to work best in this situation.
This can involve working with the child to help them feel better about themselves, coming up with strategies to deal with unwanted questions or to manage teasing or bullying, or even putting children in touch with each other so they can talk to someone else in a similar situation. The psychologist may also work with the family to help them understand how to best support their child.
Myths & Facts
MYTH: Children with a cleft are ‘disabled’ or have learning difficulties.
FACT: A cleft is not a ‘disability’. It may affect a child in ways that mean they need extra help, but most children with a cleft are not affected by any other condition and are capable of doing just as well at school as any other child.
MYTH: The visibility of a child’s cleft will dictate how self-conscious they are about it
FACT: This isn’t always the case – sometimes children with a more ‘obvious’ cleft may have learned to cope very well with the reactions of others, while children with a relatively ‘minor’ difference may be more anxious because of how unpredictable other people’s reactions can be. Each child is different, as are their support needs.
Nearly all children will feel at least a little nervous about starting a new school. Encourage your child to smile and keep their heads up, even when they are nervous, and reassure them that it will all become familiar soon. A practice trip to the school before term starts, or even asking to meet their teacher, can help children feel more at home in a new place.
If you haven’t already, now is the time to make sure your child has an appropriate understanding of their cleft and the reasons why they may look or sound different to their peers. Other children in school may make comments out of simple curiosity, and if your child doesn’t know how to respond it can be very distressing. Take time to practice a short explanation with your child, and consider making teachers and staff on playground duty aware of this explanation too.
It’s a good idea to make your child’s school and teachers aware of your child’s cleft and any issues it may cause now or in the future. CLAPA has put together a sample letter for teachers which you may want to use.
If your child’s teachers are interested in learning more, you can download a short guide to helping children with a cleft succeed at school. It contains some of the most important information on this page, as well as discussion points for talking about cleft lip and palate in class.
A cleft can affect a child at school in a number of different ways which may not be obvious at first. Here are some issues you may want to watch out for to make sure they are managed appropriately.
Even if your child’s cleft doesn’t cause any problems at school, they will likely still have to miss lessons to attend cleft clinic and hospital appointments. If they need regular treatment such as speech and language therapy, they may need to come out of class more frequently. This can lead to missing out on 100% attendance awards, or even warning letters about ‘persistent absence’ when a child’s attendance (even if absences have been authorised) drops below 85%.
Make sure you tell the school about any upcoming appointments as soon as possible to help them plan around it, and, where possible, ask for appointments in the late afternoon, as your child will usually retain their ‘present’ mark for that session.
How Schools Can Help
Adapt their attendance reward policy so it doesn’t exclude pupils absent for medical reasons. Instead of ‘100% attendance’, they could reward ‘maximum possible’ or ‘most improved’ attendance.
Some children with a cleft feel may feel especially self-conscious about their appearance, and this can have a negative impact on their general confidence levels, class participation and sensitivity to comments from other children.
Society can also have lower expectations of people who look different, and children with a cleft may reflect this by having lower expectations of themselves.
How Schools Can Help
If a child is particularly conscious about their appearance, teachers should take extra care to look out for teasing or comments around this, and should support children who wish to explain to the rest of the class why they may look different.
Certain lessons may also bring up issues to do with their cleft or appearance, e.g. self-portraits in art classes, and these should be handled sensitively. Some lessons could also be a good opportunity to educate the rest of the class about cleft, e.g. lessons about teeth.
Sounding different can make a child feel self-conscious about their voice and they may avoid talking as a result. This can affect class participation and social interaction with other children. A child who finds it difficult to be understood by their peers may become physical in their attempts to communicate, or may be easily frustrated by the need to repeat themselves.
How Schools Can Help
Certain lessons may cause problems for children with speech difficulties, such as music (especially with wind or brass instruments), languages (children may not be able to physically pronounce certain sounds), and reading out loud.
Teachers should work in partnership with parents and a child’s Speech and Language Therapist (if applicable) to support their therapy targets during reading, phonics and other school work. Teachers who find it hard to understand children should avoid interrupting or ‘correcting’ their speech as this can cause feelings of anxiety around talking. If they have to ask the child to repeat themselves, they should do this only once, and if they are still having trouble they should then repeat back clearly what they think the child is trying to communicate until an understanding is reached. Teachers should be patient, encourage children to use their voices, and praise their successes and milestones.
Children born with a cleft palate may have recurring hearing issues, and as these can develop gradually they may not even realise that there is anything wrong at first. As a result of hearing problems, children may not seem to be paying attention, their comprehension levels may be low, or they may become more physical in their attempts to see people’s faces and lip-read.
How Schools Can Help
Teachers should look out for problems like this and alert parents if they suspect anything. It can help to sit the child somewhere in the room where they can clearly see the teacher’s face. Special allowances may also need to be made for examinations that involve listening to tape recorders in large rooms.
Children who look and/or sound different may have low expectations of themselves and believe that others do too. This can affect how they participate or behave in class and at break times, as well as how they do academically. They may behave in ways that can be seen as disruptive, such as refusing to do tasks or becoming aggressive, or they may become more insular.
Recognising a child’s abilities and encouraging them in focusing on and developing these can be a big help. Children often become aware of these abilities for the first time by having it named and being able to talk about it, even if these abilities are simple things like being compassionate or enthusiastic.
Encouraging out of school activities or arranging play dates can also help. Consider making an appointment with the Clinical Psychologist with your Cleft Team if you think it will help.
How Schools Can Help
Making teachers aware of these issues is the first step towards managing them. There are a number of strategies that might help. For example, teachers could ensure that groups for activities are chosen by some other means than popularity or friendship groups.
A School’s Responsibilities
Under the Special Educational Needs Code of Practice (England and Wales) and the Education (Additional Support for Learning) (Scotland) Act 2004, schools have a duty to meet every child’s needs.
Children with a cleft may need extra support for a number of reasons, and schools have a duty to do their best to provide this. Not every child with a cleft will need extra support, and, of those that do, most will not need it for their whole school life.
What is SEN/ASN?
Special Educational Needs (SEN) is a term set out by the Government in England and Wales, its equivalent in Scotland is Additional Support Needs (ASN).
This simply means that a child has a learning difficulty or a disability which makes it harder for them to learn or access education. Although CLAPA would not consider a cleft to be a disability, a child may have difficulties with speech and language or hearing as a result of their cleft, and this may lead to their school recommending an assessment for SEN/ASN. Ask your child’s teacher or the person at the school who deals with these issues if you have any questions.
What is an assessment?
An assessment will be undertaken by the Local Education Authority (LEA) to judge whether or not your child needs extra help in school. You may get a statement of SEN/ASN which sets out what your child’s needs are, what support they will require in school, and which school will provide this support. These are usually reviewed every year. If you don’t agree with something in the statement, or if your child doesn’t appear to be getting the support the assessment judged they were entitled to, you should talk to the school.
Details of how children with additional support needs are handled differ from country to country, and sometimes from school to school. You can find more information using the following links:
Don’t wait for the school to ask you, or for any problems to come up. Keep the school up to date about your child’s situation as it changes, and make sure they understand what a cleft is and what issues may come up for your child in particular. Inform them of any operations or particular appointments coming up, whether it’s appropriate for teachers to share this with the rest of the class, and if there’s anything they can do to help.
You can send this information in before school even begins so the teachers have a head start. It may also be a good idea to do this for each year, as information may not be passed on to the next teacher. You can refer them to the CLAPA website or even provide them with a copy of our ‘School Years’ leaflet to help.
If you have questions or concerns, share them
Ask for a meeting with the school (if possible, with the person who deals with children with additional needs) and write down your questions beforehand.
Your questions might include:
- How will the school make sure that the cover staff, kitchen staff and break time staff are aware of any additional needs?
- How will the school work with external agencies such as Speech and Language Therapists?
- Who is responsible for making sure your child’s support plan is carried out?
- How will the school approach studying potentially sensitive subjects, such as teeth?
- How can my child access work or catch up with the class when they take time off for operations?
Keep good records
The various professionals and specialists involved with your child’s care will need different pieces of information at different times, e.g. the dates and names of operations, names of other professionals, the particular assessments and treatments they’ve had, etc. It gets harder to remember all of these details as time goes by, so keep a written record of everything in one file.
Talk to your child
If they have additional support needs, it’s likely your child will soon realise that they have to attend more appointments or are treated a little differently to other children. Take the time to explain to them why this is, and help them to come up with a simple explanation for any curious classmates.
Make sure you also take the time to focus on your child’s achievements and what they are enjoying in school to help boost their self-esteem.
Published: November 2015
Next Review: February 2017
Source(s): Range of existing literature from CLAPA, including a leaflet produced by the Royal College of Surgeons in association with CLAPA. Stories and suggestions from our community have been included throughout. Information from Changing Faces and Kidscape was also consulted. This information has been reviewed by cleft health professionals as well as members of CLAPA’s community. An Independent Education Social Worker was also consulted regarding the information about schools.
If you have a comment or question about the information in this page, or would like to know more about the sources of this information, please contact Communications & Information Manager Anna Martindale at [email protected] or 020 7833 4883.