See the following organisations which offer disability-specific support for parents and carers. This is not an exhaustive list, but a hand-picked selection of really useful sources of help. For the most comprehensive, searchable guide to services for disabled children and their families please see the Royal Borough of Greenwich's Local Offer website.
ASD SUPPORT GROUP FOR BLACK AND ETHNIC MINORITIES FAMILIES
‘Rose Just Talk” is an Ethnic Minorities Support Group for families on the autistic spectrum. The group meets every term at Charlton School, Charlton Park Road, Charlton, SE7 8HX.
Phone Rose Edumijeke 0208 858 7254 or
Special Needs Jungle is a website packed with useful information about special educational needs and disability issues faced by children and their parents.
It has personal stories from parents, articles from charities and useful resources and has become a guide to the SEN reforms that are taking place – for parents and for professionals.
BLADDER AND BOWEL UK
Bladder and Bowel UK offers advice and information on all bladder and bowel issues in children and young people, including those with additional needs. They have a range of literature that will help parents, carers, professionals and schools cope with incontinence in children and young people.
Children`s Specialist Continence Advisors can provide support, advice and information. They can also suggest how to approach your child`s GP, health visitor, school nurse, or other healthcare professional for treatment if appropriate. They should be able to offer individual assessment and treatment or refer you to a specialist for this, if necessary.
They can be contacted on the National Confidential Bladder and Bowel UK helpline ( 0161 607 8219) or email firstname.lastname@example.org
If there is no one available to help you, please do leave your contact details and they will get back to you, although this may not be the same day.
ERIC, The Children's Bowel & Bladder Charity
ERIC is the only charity dedicated to the bowel
and bladder health of all children and teenagers in the UK. ERIC
provides support, information and understanding to children and
teenagers and enables parents, carers and professionals to help them
establish good bowel and bladder health. ERIC's information and
resources can be found on its website www.eric.org.uk and the
charity offers one-to-one support via its helpline for anyone dealing
with children's continence issues including bedwetting, daytime
wetting, constipation and soiling. ERIC also trains health and
education professionals and campaigns to improve care for children and
teenagers with bowel and bladder conditions.
HELPLINE OPENING HOURS: 10am - 2pm Monday to Thursday. Calls to the
helpline cost 9.6p per minute, plus the phone company's access charge.
CONTACT DETAILS: Helpline telephone - 0845 370 8008
Tel - Main ERIC office 0117 9603060
‘WE LISTEN’ SUPPORT GROUP FOR BLACK AND MINORITY ETHNIC FAMILIES WITH ASD
The ‘We Listen’ group has been launched for families from an ethnic minority group who may have a child with social and communication difficulties or ASD (Autistic Spectrum Disorder). The group meets on the third Friday of every month at Waterways Children’s Centre on Southwood Road, Thamesmead, London SE28 8EZ from 10am -12 noon. Here’s what group leader Anne has to say about staying positive and joining in:
“Who do I turn to? It seems like I am at a crossroads. Am I alone or why don’t I see others facing similar uncertainty, pain, anxiety, hopelessness, stigma and self-alienation? Is the spinning, screaming, lashing out and the rigidity of behavioural patterns associated with Autism peculiar to my child alone?”
I am a parent, from an ethnic minority background, who has gone down a similar path and am still going through it but believe me there is a great light at the end of the tunnel. What might have seemed to be a very bleak future can truly be very promising with the right support in place.”
I feel there is widespread hopelessness and ignorance about autism and the aim of this support group is not to focus on changing parents attitudes about the condition alone, but more to focus on what can be done to support our children. If you, like me, often find yourself with questions needing answers please come along, so together we can answer some of the most pressing issues and questions that we wrestle with every day and meet some amazing and friendly people in the autism world and learn from their experiences.”
Here’s an uplifiting look at what autism can mean for your family
Autism in Black Minority Ethnicity
Read here for thoughts on building hopes and dreams for your child
What do you consider to be a fulfilled life for your autistic child? Second session
If you need to contact Anne or would just like a chat, call her on 07533189473 or email email@example.com
SPECIALIST BEHAVIOUR ADVICE SERVICE (AUTISM)
The Specialist Behaviour Advice Service offers information and advice to parents/carers and family members of individuals with a diagnosis of an autism spectrum disorder. Additionally information and advice can be given to professionals working with autistic children or adults and adults may also self-refer.
The service can offer help and advice on a range of topics including aggression, social skills, obsessions, anxiety and sensory issues. Contact the service directly via email to book a telephone appointment, or ask for advice by email. We aim to reply within 14 working days.
Points to be discussed during a telephone appointment will be previously established. During the appointment behaviour will be talked through and strategies suggested. Follow up will include personalised information sent to the enquirer by email or if necessary post.
Appointments with the service can also be made via the Autism Helpline 0808 800 4104.
CHILDHOOD STROKE PROJECT
The Childhood Stroke Project is a collaboration between the Stroke Association and Evelina London Children's Hospital. It has been funded by ICAP Charity Day. The Childhood Stroke Project has set up a research study - to identify the needs of families and young people - and guide our work going forwards. We have also established a Childhood Stroke Support Service.
This service provides:
- tailored information for children, young people and families affected by stroke, about the nature of their stroke or related diagnoses
- advice about local services and follow-up that families may find useful
- support navigating health, social care and educational processes
- advocacy for young people and families in accessing the services they need
- emotional support in adjusting to the impact of stroke
- signposting to peer support networks for parents and young people.
If you would like to speak to someone for advice or support, please contact:
Anna Panton Childhood Stroke Project Manager
Anna.Panton@stroke.org.uk 07715 065925
Other sources of peer support
- TalkStroke – our discussion forum for everyone affected by stroke.
- Follow us on Facebook.
- We are aware of two other Facebook groups for the parents of childhood stroke survivors: My child had a stroke and Childhood stroke support - a UK based site with information and a chatroom for parents of stroke survivors.
- Hemi Chat - a parent led support group with access to a Facebook group and opportunities to meet other families affected by hemiplegia across the UK.
- East Kent Childhood Stroke Support Group - a support group set up by parents in the East Kent area.
- Face to Face - a parent befriending scheme run by SCOPE.
NATIONAL DEAF CHILDRENS SOCIETY
NSCS provides support, information and advice for deaf children, young people and their families or professionals who work with them. The National Charity is dedicated to acting on behalf of deaf children and continue to campaign for improvements in services. The local group in Lewisham was formed by parents to support other families with deaf children. It is a newly formed network, for deaf children from ages 0-5. As well as providing advice and information, they have a wide range of fun activities, including sing and sign, free play with toys and paints and arts and crafts sessions.
DYSLEXIA ASSOCIATION OF BEXLEY, BROMLEY, GREENWICH AND LEWISHAM
DABBGL provides information to people with dyslexia and parents, teachers or other professionals who work alongside them. There are free meetings, open to anyone, as well as a separate adult group meeting. They offer advice on special educational needs, training for employers, schools and parents and can provide contacts for specialist teaching. For further information on dyslexia screening please visit their website on contact the helpline.
ROYAL LONDON SOCIETY FOR BLIND PEOPLE
RLSB are an organisation committed to supporting an estimated 7,000 blind and partially sighted children and young people across London and the South East. Their aim is to give young blind people freedom to live independently, and help those to do so through their education, sport, creative and developmental services. RLSB are dedicated to passing on their skills and knowledge to families allowing confidence to grow and blind and partially sighted people to be empowered. Visit their website for further information on support groups, family workshops, sports and technology sessions.
Epilepsy Action is the UK’s largest epilepsy charity and works to improve the lives of those affected by the condition. As a member-led group, they act as a voice for an estimated 456,000 people with epilepsy in Britain. Epilepsy Action provide a spectrum of help and support, including information on the basics of the condition and advice on living with epilepsy. Visit their website to find an online forum which helps to connect people and families affected by epilepsy.
https://forum.epilepsy.org.uk/ As well as help online, you can reach them directly through their helpline.
FAMILIES LIVING WITH AUTISM
FLAG is a local support group for families living with autism in Greenwich. They provide monthly drop in meeting sessions held at 4 Wensley Close, Eltham, SE95AB.
Dates can be found through the NAS website.
For more information, please contact Leslie Davis.
Email: Leslie Davis (independent family advisor) firstname.lastname@example.org
NATIONAL AUTISTIC SOCIETY GREENWICH (NAS GREENWICH)The National Autistic Society is the UK’s leading charity for all people connected to autism. The NAS Greenwich is a local branch of volunteers that signposts and provides information online and through events, runs various support groups for adults (NAS Social Club, NAS Pub Group, Autism Hub), children and young people (NAS Saturday Club), campaigns and influences at local and national levels and fundraises to support groups and resources in the area.
They have a website, Facebook page, newsletters to a mailing list and Twitter account for keeping in contact and sharing updates and information. We welcome new members, volunteers and donations to support and expand our activities.