We deliver a range of groups and activities for families affected by autism (for example pizza making, learning karate, for children and their siblings; mindfulness course for parents), as well as monthly support group meetings enabling parents to talk and support each other whilst the children socialise and play with the fantastic facilities at the venue. We also sometimes arrange speakers to come to the monthly meetings to benefit parents, for example, we have had Contact A Family talk about SEND law and two Occupational Therapists talk about sensory sensitivities.
HDSSG arrange social, sporting and educational events and activities for children with Down Syndrome and their families. We expect the remit of HDSSG to continue to expand as our children grow into adulthood and we are always open to suggestions for new activities and ways in which we can support our members.
We believe it is crucial to celebrate our children’s achievements, champion their views and aspirations, challenge out-dated thinking and spread current, accurate information about Down Syndrome.
The IEP process can be confusing and overwhelming for parents, teachers and students, alike. But it doesn’t have to be! Learning Essentials has teamed up with local experts to give you valuable insights into the IEP process—and it’s free!
Executive Director Wendy Taylor hosts educators, psychologists, and other medical providers who provide pro tips on what to ask, what to bring, and what to take away from your next IEP meeting. This is a podcast series you will not want to miss!
Note: This is a US-based resource about the US SEN system
KLS Support UK was started in 2011 by three mothers of children suffering from Kleine-Levin Syndrome (KLS).
KLS is a rare disorder characterised by recurrent bouts of excessive sleep associated with reduced understanding of the world and altered behaviour. KLS usually starts in the teenage years but can occur in younger children and adults. Each episode lasts days, weeks or months during which time all normal daily activities stop. Individuals are not able to care for themselves or attend school and work. People with KLS coming out of episodes will have little or no memory of what happened during an episode. Between episodes they have normal sleep, understanding and behaviour. KLS episodes may continue for 10 years or more. KLS is sometimes referred to in the media as “Sleeping Beauty” syndrome.
Having struggled for many years to find a diagnosis for our children and information on how to help them, we decided to set up this group to help other families in the same predicament.
All four trustees are mothers of children with/or recovering from KLS. KLS Support UK is targeted at UK sufferers and their families. We appreciate that there are few groups worldwide specialising in KLS so will endeavour to help those from overseas where possible.
In 2012 KLS Support UK became a small charity which is recognised by HMRC as a charity for tax purposes. We are proud to be associated with The KLS Foundation in America.
There is a vast amount of information and resources on our website and if you have specific medical questions we have medical advisers who can help. The trustees also have a lot of experience of caring for someone with KLS, the medical, school and further education systems. If we do not know the answer we can point you in the right direction for help.
Please make contact through the Contact Us form which is on the website. One of the trustees will get back to you asap.
If you're worried about your child’s future without you, Mencap’s Wills & Trusts Service is here to help. We offer free and clear information on what you can do to give your child financial security, protect them from outside influences and ensure minimal change to their quality of life after you're gone.
For free information and support, download our free guides from mencap.org.uk/willsandtrusts, call 020 7696 6925 or email firstname.lastname@example.org.
We offer: specialist parenting programmes on ASD, ADHD & wide range of special needs
A Diagnosis Support Service for families when they are in the process of getting a diagnosis or recently received one
We offer a sleep service
We offer specialist training to practitioners working with families
Formerly known as the PDA Contact Group, the PDA Society aims to offer support, advice and information to anyone involved with an individual with PDA, whether suspected or diagnosed, child or adult.
The PDA Society is a voluntary organisation, overseen by a management committee, each of whom is a parent of a child with PDA.
The PDA Contact Group was originally set up in 1997 to put people with an interest in PDA in touch with each other, which we still do today through our discussion forum. The change in name to the PDA Society is a reflection that we are becoming more than a ‘contact group’ and see ourselves as the voice for PDA, running awareness campaigns and sharing information.
Our objectives include:
to raise awareness and understanding about the condition
to signpost people towards gaining a diagnosis
providing a telephone support line
sending people information through email or post about PDA
putting families in touch with each other locally
imparting good quality information about the condition as new research comes out
and providing people with information to set up their own local support groups.
We will fund these objectives through direct donations to the group, proceeds from awareness days, and any funding we manage to secure through grants/awards. We aim to become a registered charity in the future to be able to further those aims