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Identifying emerging challenging behaviours in young children with TSC

Some families with children living with TSC (Tuberous Sclerosis Complex) may encounter challenging behaviours in their young children.  However, it can be difficult to recognise these emerging behaviours and/or know how to effectively manage them.

This page offers resources to help parents, particularly those with younger children, better understand and recognise subtle challenging behaviours, including non-verbal communication. This page featuring Developmental Paediatrician, Dr Kate Thomson Bowe, includes both a video and presentation slides. Additionally, there are recommended sources of further information available.

Please note: The opinions expressed are those of the presenter(s) and are not an official pronouncement of TSA.  It is important to consult with a health care professional before taking any action based on the information provided.

Further resources on identifying emerging challenging behaviours in young children with TSC
    1. https://www.ndis.gov.au/ The National Disability Insurance Scheme (NDIS) is an Australian government-funded program that provides support to eligible people with permanent and significant disability. Their ‘Early Childhood Intervention’ program offers teams of professionals such as speech pathologists, occupational therapists, psychologists, behaviour therapists, early childhood educators, and social workers to provide support to young children with disabilities.
    2. https://raisingchildren.net.au/ Raising Children Network is an Australian parenting website that provides information and advice from experts. It covers a variety of topics, including supporting siblings of children with disabilities, toddler behaviour, school-aged sleep, and general disability topics. It also provides a parent guide to therapies for children with autism.
    3. https://www.mytime.net.au/ MyTime is a free Australian program that provides play helpers for children with disabilities while their parents and caregivers participate in facilitated groups to discuss, share experiences, and access information and services in their local area. MyTime supports early engagement in a group setting and sharing experiences.
    4. https://www.triplep-parenting.net.au/au-uken/get-started/triple-p-courses-for-parents-of-children-birth-12-years/stepping-stones/ Triple P is a positive parenting program in Australia that provides a range of formats, including group seminars, primary care (short-tailored support), or standard (8-10 hour-long sessions for the family). The program aims to help parents of children with disabilities develop effective parenting strategies. Triple P has local providers throughout Australia.
    5. http://resourcingparents.nsw.gov.au/Parents Resourcing Parents is a website that provides a variety of resources for parents in New South Wales (NSW). They offer parenting courses, apps, and websites to support families. They have a ‘Safe Harbour’ tab, which provides courses for parents supporting children with additional needs. They also have a program called LOVE Talk SING Read PLAY, which aims to promote early literacy and communication skills in young children.
    6. https://deadlytots.com.au/ Deadly Tots is a website that provides resources for Aboriginal families with young children in NSW. They offer culturally appropriate parenting support and advice.
    7. https://northcott.com.au/exploring-the-fun-world-of-social-stories/ Northcott is an Australian disability service provider that offers support and services to people with disabilities. Their website provides information on social stories, a tool that uses pictures and text to help individuals with social communication difficulties understand and navigate social situations. They strongly suggest asking a child’s speech pathologist for help in writing social stories.

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