Sadia Nakimera | Let Us Communicate | London, UK
Community Organisation (Disability)
Am a mother of a special education needs child. My son (9 years old was diagnosed with Autism, Global development delay and Sensory processing disorder at 3.5 years old).
Let Us Communicate (LUC) is a SEND support network for parents, carers and professionals supporting children, young people and adults in UK. After the diagnosis of my child in February 2013. It dawned on me very quickly that services were slow to kick in, the wait was unbearable and I needed support from fellow parents who have experienced this journey into the unknown. LUC was found on 23 October 2013.
The LUC idea started during the Let Me Communicate (SLT course) where I met other parents and I suggested we start a parent support group called “let us communicate” and keep the fire burning. Without the parents’ voices, our children are left without appropriate support. We wanted to turn negatives into positives.
We run monthly workshops, expert professional training, engage with local authority officers, service providers, world class experts and specialists, family fun days, work with local community organisations to raise SEND awareness and acceptance and work with the parent carer forum and parents co-production teams to influence decision making.
About my son - I decided to put things into place. I hired a private Behaviour Consultant to work on toileting, communication and independence. I have been fighting for the best therapies and interventions for my child and sharing my knowledge, advocating and running workshops with other families on the SEND journey. I set up Facebook pages, WhatsApp groups, Instagram page and Twitter page to reach out to as many families and professionals as possible.The Whatsapp group was set up to help parents communicate amongst themselves and help each other through shared experiences. I search and organise for specialist professionals to deliver workshops (Speech/Language therapists, Behaviour Consultants, SEND professioanals) for free or at reduce cost to families. I work closely with our local leaders to address issues and offer them solutions. We have no funding to run the workshops or any other activities. Am trying to make the Local Council deliver the best for children with special needs. I have supported families to apply for Education Health Care plans, supported them through SENDIST tribunals to get the right support for their children,I attend meetings to support families get support for their children. Train with local community organisers on how to communicate effectively and negotiate for services. We recently got our own venue for free to use every Thursday of the week. This is a safe place for parents to share their experiences, seek help and ask for referrals for services and treatments. We are now over 300 members, parents share their success stories everyday from very small steps to very big outcomes.We have learned that when families and school work together there are 3 winners. The child progresses and achieves much more.
Topics covered: Understanding Autism, Early intervention, EHCP, Parent empowerment, LA/school/SENco duties, parental self care, entitlements, challenging behaviours, independent life skills, tribunals, Speech and language therapies, occupational therapy, behaviour therapies, sleep issues, feeding problems, sensory processing disorders.
We are on a learning journey with our SEND children, young people and adults.
LUC is a voice for SEND children, young people and adults.
LUC is an ear for SEND families and communities.
LUC is a solution for professionals.