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Helpful Therapies

Therapy Directory

"We promote the benefits of complementary therapy and aim to give visitors all the information they need to help them make an informed decision about whether therapy would be right for them. The website has an FAQ's section, a number of useful articles written by our members and the facility to search for a practitioner in your area. To ensure the professionalism of our website, all listed therapists have provided us with qualifications and insurance cover or proof of membership with a professional body."

www.therapy-directory.org.uk

Sing and Sign

Barley Corr "We are doing sing and sign wih our daughter to get her into signing. As a significant number of kabuki children have some form of hearing loss signing helps communication and is fun as well!" www.singandsign.com

 

 

 

PROMPT Therapy

Jansen Rothman Hebert "We recently got a speech therapist trained in PROMPT therapy and we've seen so much improvement in our daughter's speech. www.promptinstitute.com . This is where you can look for a therapist www.promptinstitute.com/therapist but it's not a complete list because my therapist is not on it."

See and learn

Elinor Grant "The See and Learn reading programme (www.seeandlearn.org) was developed for kids with Downs Syndrome but is useful for lots of people - and might be especially helpful if your child is finding phonics challenging. Our daughter has also been enjoying Bear Necessities (http://www.prometheantrust.org/)" 

Speech and Language Therapy

Elinor Grant "Speech and language therapy is often essential for children with Kabuki Syndrome, and the specific programme of work needed is likely to vary from child to child. We are currently working on improving our daughter's clarity of speech with our community speech therapist who is using some resources and ideas from the Nuffield programme www.ndp3.org.  We have also had a lot of success on an input modelling based approach."

Portage

Elinor Grant "Around and prior to diagnosis kept me sane and really helped us pull our life as a family back together. Portage workers come and play with your child in your home, and also understand and can chat through the pressures and stresses of learning to help a child who needs more support. Our Portage worker also helped us to get our daughter to preschool with one to one support. I can't talk highly enough of it." www.portage.org.uk

Gymnastics

Elinor Grant "It is worth checking if any local facilities run specialist provisions for kids who need more support. We go to a mainstream class at Wiltshire Gymnastics but they have given our daughter a Special Needs specialist one to one coach, who works with her in the session. It has not only helped her build core strength, it has also helped her motor planning and confidence. It has also taught me better ways of helping her to negotiate physical obstacles." www.wiltshiregymnastics.co.uk

Hydrotherapy / Swimming

Elinor Grant "Our daughter loves it and because of her hip problems (which are common with Kabuki) it has sometimes been all she can do to help build muscle tone without risking damaging the hips." www.nasch.org.uk

Horse Riding

Sally Trewartha "Our son has been riding since he was 3 and a half, it has been great for his core strength and balance. He is a really gentle soul and the horses seem to respond to that. He says that when he grows up he wants to be a champion showpumper! The Riding for the Disabled Association website lists the centres across the contry." www.rda.org.uk

Music Therapy

Many people who have Kabuki Syndrome benefit from music therapy, aspecially if they are delayed in their speech and language. It can help to bring them out of their shell, learn how to take turns etc

 

To find out more have a look at 

 

http://www.thomassfund.org.uk

Makaton

This is the signing system that is used by many Speech and Language Therapists. It is the same as the signing on Mr Tumble. www.makaton.org

Occupational Therapy

Occupational therapy provides practical support to enable people to facilitate recovery and overcome any barriers that prevent them from doing the activities (occupations) that matter to them. This helps to increase people's independence and satisfaction in all aspects of life. - See more at: www.cot.co.uk

Rexlexive Therapy

Sarah Alexandra Summers "Our son does reflexive therapy. This is aimed at correcting neurological immaturities in the nervous system which if present will interfere with movement, learning and behaviour. These reflexes should switch off at certain ages. If they are retained they result in developmental delay. They also treat sensory processing disorders, auditory processing disorder and handwriting difficulties. We have been on the programme for exactly 2 years. He started off at joint bottom of his nursery class and has progressed to top sets in maths and phonics in reception.....he's still got a mountain to climb but he's come such a long way. The company I use is www.hemispheres.org.uk. It's once a month and you are given exercises to do everyday for 15 -20minutes. Would highly recommend!

Therapy Street

This is a great site for OT type activity ideas www.therapystreetforkids.com

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There are lots of activities and therapies which can be beneficial to people who have Kabuki Syndrome, some things may work for some and not for others. We asked our members to recommend, from their experience, what they have found useful and enjoyable. We have not necessarily checked out these activities ourselves and do not have any affiliation to the organisations. This list is just intended as a resource of things which you may like to try out. If you know of something that you think we should add to this list just get in touch and we will add it here.