When a child is first diagnosed with Kabuki Syndrome parents can be very daunted by the 'learning difficulties' which are always listed as a factor. Unfortunately there is often still a stigma attached to the term ‘special needs’ and no one wants their child to be labelled. Fortunately there are lots of wonderful schools and nurseries which will welcome a child with Kabuki. Hopefully the links and advice in this section will make the process of getting the support which your child may need a little easier.
The Education Act of 1981 says that 'children who find learning more difficult than the majority of children their own age' have special educational needs. Wherever possible, these children 'should have their needs met within mainstream school with additional help and support'.
It is likely that your child with Kabuki will need a Statement of Special Educational Needs (Statement for short) This may be because of their learning difficulties, communication difficulties, feeding difficulties or because they find it hard to get around. A child who needs to be tube fed would have a SEN Auxiliary/Care Worker at nursery or school with them who would be trained to feed them.Similar provisions are made in the Statutory Rules of Northern Ireland 1985 No 365 Education (Special Educational Needs). In Scotland, the new Education (Additional Support for Learning) Bill may change the law about how special needs are identified and what arrangements will be made to provide for them. In practice the needs are met through a statement of special educational needs (SEN), or record of needs in Scotland.
You can order your own free copy of the Special Educational Needs Code of Practice by calling 0845 60 222 60 or clickinghttps://www.education.gov.uk/publications/standard/publicationDetail/Page1/DfES%200581%202001If you live in Scotland you will need this one http://www.scotland.gov.uk/Publications/2004/02/19009/33932Useful links
Independent Parental Special Educational Advice, or IPSEA for short, run a free helpline where a trained legal professional can advise you on issues such as Appeals or what to include in your letters to your LEA. They also have downloadable templates for standard letters. They are incredibly helpful and the organisation is run by parents who have been through the process themselves. 0800 018 4016 (Monday to Thursday 10am to 4pm and 7pm to 9pm; Fridayhttp://www.ipsea.org.uk/
The SEN National Advice Service
Contact a Family has launched the only country-wide advice service for Special Educational Needs (SEN) – The SEN National Advice Service.This service will help families whose child may have special educational needs – they provide advice and information on any aspect of your child’s education. Help is available through their helpline 0808 808 3555, or email:firstname.lastname@example.org://www.cafamily.org.uk/families/SEN.htmlThey provide separate information for families in Scotland http://www.cafamily.org.uk/pdfs/eduscot.pdf
Parent Partnership Services (PPL) are 'statutory services offering information advice and support to parents and carers of children and young people with special educational needs (SEN)'. You can find your local ones by clicking herehttp://www.parentpartnership.org.uk/
Finding a school or nursery
Most teachers and Early Years practitioners will never have come across a child with Kabuki before, however, if they are good at their jobs they will see that every child is different and has his or her own needs regardless of a diagnosis. You will know what is the best environment for your child but as a starting point we have put together these lists of questions for you to think about when going to see a school or nursery.Here is a list of questions to ask and things to look for when looking for a nursery or pre-school for your child with Kabuki;
1. Talk to the nursery manager and the SENCo (Special Educational Needs Coordinator), are they open and interested in learning about Kabuki?
2. If your child is taking medication discuss this with them, they will have procedures to follow.
3. Do they have any other children in the nursery with similar needs?
4. If your child is tube fed they will need to be trained in how to do this, are they open to learning?
5. Are they open to other therapists coming into the nursery, for example Speech and Language or Occupational Therapy? and do you think they would take on advice from these professionals?
6. Do the children look well-stimulated, sitting down at activities, engaged by the staff?
7. How is the day structured and what sort of activities are built into the timetable?
8. Does the building look well-kept, safe and secure and is it suitable for your child if then have problems with getting around?
9. How many of the staff are qualified?
10. Does it have a good quality outdoor play areas? If so, how often do the children get access?
11. Does indoor and outdoor equipment appear of good quality?
12. Do they cook food on the premises?
13. What are the menus like? Do they include a good combination of fresh (rather than tinned) fruit and vegetables?
14. Do you have confidence that the nursery manager possesses strong leadership skills, is involved and has a 'hands-on' approach?
15. Check the Ofsted report (Ofsted website: http://www.ofsted.gov.uk)
16. Children with Kabuki can be late to toilet-train, discuss this with the staff.
17. What happens if a child gets sick at nursery?
18. What happens if a child needs to sleep?
19. What activities are the children engaged in?
20. Is there a key-worker system? What happens in the absence of your child's usual carer?
Each child with Kabuki is different and has different needs so it is hard to say what support they will need through their education. The best school will be one that is willing to embrace all parts of your child’s education.
The following list is relevant to children starting in primary school, we hope to add information for secondary schools later;
1. You can find out about schools in your area from:the school prospectus or any newslettersthe school websitethe governors’ annual report to parentsthe latest Ofsted report (Ofsted website: www.ofsted.gov.uk)the school’s policies on SEN, behaviour and bullyingtalking to other parentstalking to the Parent Partnership Worker (PPW)going to school events (for example, the summer fair or Christmas play)
2. If your child already has a statement of SEN, you should discuss possible schools at the annual review. If your child goes to a nursery, ask for the head teacher’s advice about local schools.
3. You can phone or write to the school to arrange a visit. Some schools have set days and times for visits, and others may make an appointment to suit you.
4. Do you want to take your child when you first visit, or maybe visit again later?
5. Do you want to take a friend or family member with you? They may notice different things and afterwards you can talk to them about how you feel.
6. Who do you want to meet? The SENCo, the head teacher or the class teacher for your child’s age group? or all three.
7. How is SEN support organised? Does it take place in the classroom?
8. How will staff know about your child’s needs?
9. Does the school help all the children to understand every one's different needs?
10. How will the school let you know about your child’s progress and what’s happening in the school generally?
11. Can your child use the playground and move around the school easily?
12. Is the school easy to get to from your home?
13. Think about what your child needs now and what they may need in the future.
14. Do you feel welcome?
15. Do the children seem happy and interested?
16. Look at the acoustics in the school, if your child has difficulty hearing or making themselves understood then big rooms which echo may not be good.
17. Is children’s work displayed? Does it show all abilities and cultures?
18. Are people helpful and friendly?
19. If your child is taking medication discuss this with the school, they will have procedures to follow and this will be included in your child’s Statement.
20. Do they have any other children in the school with similar needs?
21. If your child is tube fed they will need to be trained in how to do this, are they open to learning, the provision for this will be included in your child’s Statement?
22. Do they have any other children in the school with similar needs?
23. If your child is tube fed they will need to be trained in how to do this, are they open to learning, the provision for this will be included in your child’s Statement?
24. Are they open to other therapists coming into the school, for example Speech and Language or Occupational Therapy? and do you think they would take on advice from these professionals?