Useful links for KSA family members
These are some external links to information which you may find helpful.
The KSA accepts no responsibility for the quality of information provided.
Mental health
Provides a wide range of support and information including help during the Covid crisis
https://www.mind.org.uk/information-support/a-z-mental-health/
They create a welcoming space for free effective personalised digital mental health care. Available to all.
A child and adolescent mental health service run by NHS
Get answers on mental health from world leading experts and those with lived experience.
A wide range of webinars.
Education
As some KS/XXY people find it difficult to work quickly/organise themselves, they may be able to access support at university or college.
https://www.studying-in-uk.org/studying-in-uk-as-a-student-with-disabilities/
Mencap have a very comprehensive website which gives advice on getting support for pre-school and school aged children.
It tells you who to speak to, how to appeal and much more.
SOS!SEN offers free, friendly, independent and confidential support for parents and carers of children with special educational needs (SEN).
Operates in England and Wales.
Helpline: 020 8538 3731 (term time only)
Brain Gym is a series of quick, fun and effective exercises designed to enhance performance by assisting whole brain integration. Developed over 25 years ago by Paul Dennison, it was originally designed to help children and adults with reading difficulties; it is now a commonly used technique in education and commerce.
Teachers who work with pupils with Special Educational Needs may well have come across the technique before, but recently a wider range of users has discovered its potential.
Find out more by visiting the official Brain-Gym website or asking your school’s SENCo. There are several books on the topic available via your local bookstore or online.
IPSEA is a registered charity (number 327691). IPSEA offers free and independent legally based information, advice and support to help get the right education for children and young people with all kinds of special educational needs (SEN) and disabilities.
General information
Confidence building, help to get into work or start a business.
For young adults aged 16 to 25.
Some of our KSA youngsters have benefitted already.
Many KS/XXY folk may be on the autistic spectrum. KS isn’t recognised as a disability as symptoms vary so much but if you have an additional, better known condition such as Asperger’s or dyslexia it may be easier to get support and possibly benefits.
www.aspergerfoundation.org.uk
Welcome to the website of the Asperger’s Syndrome Foundation. We are a small registered charity based in central London, England. We do hope that you will find our site helpful and informative. We will update it regularly.
The Asperger’s Syndrome Foundation is committed to promoting awareness and understanding of Asperger’s Syndrome. The Foundation aims to promote high quality support and services, and to enable people with Asperger’s syndrome to develop into members of the community who are respected for their contribution and recognised for their unique differences.
Mencap is the leading voice of learning disability. They work in partnership with people with a learning disability, and all their services support people to live life as they choose.
The Carers’ Trust provides information, support and advice for carers.
The National Careers Service is completely free and accessible to anyone aged 13+ and living in England. To access the service call 0800 100 900 or visit https://nationalcareers.service.gov.uk/
Support is available to everyone whether in employment, on furlough or unemployed.
If you are unemployed or furloughed, this free service can support you to:
• Update your CV
• Develop online interview skills
• Get new qualifications
• Plan your next career step
Contact, the charity for families with disabled children
We support families, bring families together and help families take action for others.
Disability Law Service is a unique charity that has been providing free legal advice and representation for disabled people since 1975.
Hft is a national charity providing services for people with learning disabilities. They can provide support from just a couple of hours a week up to 24 hours a day.
Food and nutrition is part of everyday life. Most of us in this country take it for granted.
We also know that what we eat affects our health no matter what age we are and no matter whether we are well or have a disease or condition such as cancer, diabetes, irritable bowel syndrome, or another.
We are surrounded by information about food and nutrition but often we need help to make the right food choices to maximise our health and know what’s fact or fiction.
https://www.bda.uk.com/food-health/your-health.html
Speech, language development delays and communication problems are probably the most common symptom of KS/XXY in children. Afasic offers support and information.
This guide was produced by Cerebra, who support children & young people with brain injuries. It is one of the best that we have seen for this sort of application. With just a little interpretation in a KS context, it should prove a tremendous help in accessing DLA. There is a short test, or you can download their weightier document (allow a minute or two for it to download).
http://w3.cerebra.org.uk/help-and-information/guides-for-parents/dla-guide/
Some parents in the KSA will require childcare within their own home.
Spectrum is a multi-award winning, parent-led children’s charity.We provide events, sessions, and support for families of children with Autism, additional needs, learning difficulties, and disabilities. As an organisation, we are family-focused, advocates of collaboration, passionate about increasing inclusion and reducing isolation whilst supporting Special Education Needs & Disabilities.
This is an umbrella body for the disabled children’s sector bringing together professionals, practioners and policy makers
KS/XXY Specific Sites
Dedicated to raising positive awareness of common but underdiagnosed genetic differences, working hard to improve lives and unlock futures.
We are working together to provide awareness through personal connections, reinforce positivity and influence change through strategic partnerships.
A Community For Klinefelter Syndrome – Living with XXY Non-Profit
The Association for X and Y Variations (AXYS) is a USA based advocacy, education and support organization for individuals with X and Y chromosome variations and their families. AXYS was formerly known as Klinefelter Syndrome and Associates (KS&A).
