Communication

Roadmap No diagnosis Communication

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Passing on information regarding health, educational and psychosocial needs is vitally important in creating and maintaining connections as well as ensuring that your/your child’s needs are met in the best ways possible. Talking with people who are a close part of daily life builds their knowledge and understanding, which can help on many levels including emotional and practical support.

 

School

Local and national legislation exists in many areas to ensure students with any disabilities can access and participate in education on the same basis as other students. Accessible and inclusive learning spaces, adequate teacher staffing and training, consideration of physical and social factors impacting education access and active working relationships between carers/families and education professionals all contribute significantly to the experience of attending school. In the absence of a diagnosis, it is very important that there is clear documentation from specialists detailing signs/symptoms and the associated impact to maximise access to appropriate school assessments, aids and services. 

Resources

Practical guide to providing information for schools about your child with a rare or undiagnosed condition together with template letter examples to help communicate with teachers, school nurses and physical education teachers/coaches.

Step-by-step practical guide for discussions with schools.

Brief summary to support education programs being tailored to a child’s unique qualities and needs.

Examples of disability organisations that provide information about general aspects as well as regional information regarding school access and support for students with disabilities:

 

Talking with family, friends, affected child and/or siblings

The questions of when, who and what to communicate about an undiagnosed condition depend on individual circumstances such as adjustment and coping, types of relationships and impact of the signs/symptoms for you and your family.

Many families wonder about talking with their child/young adult about health issues +/- disability and differences in an age and developmentally appropriate manner while promoting psychological well-being. Openness about health issues affecting daily life can increase your child’s coping, encourage acceptance of their differences, reduce stress and result in fewer psychological issues long-term.

Unaffected children can have many different feelings about siblings with health issues +/- disability depending on individual factors such as age, temperament and particular aspects of their sibling’s signs and symptoms (e.g. challenging behaviour, communication difficulties, level of care required).

Pregnancy planning when a family member has an undiagnosed condition can raise many concerns about the possibility of recurrence- seeking specific information from a genetic professional can help with clarifying risks and options as well as decision-making.

Resources

General tips for talking with children about disability/diagnoses.

Comprehensive guidance for families in supporting siblings of all ages.

Information for siblings about disability/conditions by age groups, tips for parents, sharing feelings and enjoying life.

Summary about genetic counseling, reasons to see and how to find a genetic counselor.

 

Suggest a resource: send email to gcwg@udninternational.org​