Most children with CF live a normal life and reach their developmental milestones, but, like many other chronic conditions, having CF means more challenges, more routines and more effort to stay healthy.
As your child grows, having CF shouldn’t define who your child is or what they can achieve; CF is part of their life, and yours, but not all of it.
Children learn how to accept and deal with the challenges they face through watching you – if you accept CF and find ways to incorporate the extra demands into your life, chances are your child will develop a positive outlook about CF.
Parenting is a tough job, and all parents benefit from lots of support and advice. SKIP is a nationwide network of individuals, community groups, government agencies, workplaces and national non-government organisations, whose aim is for all children in New Zealand to be raised in a positive way, and parents and caregivers who feel confident about managing children’s behaviours as part of a loving, nurturing relationship.
Its website provides valuable resources for parenting children under age 5, including tips on topics such as not listening, throwing tantrums, being fussy about food and whining.
Many of the issues parents face when raising a child with CF are normal, everyday challenges all parents face. We encourage you to visit the SKIP website or download the SKIP Tips app for advice on behaviours most parents find stressful.
Being a parent of a child with CF means you have extra parenting responsibilities – giving pancreatic enzymes, monitoring their diet closely, avoiding possible infection control risks, daily physio…the list goes on.
Many parents of children with CF deal with similar issues, such as fussy eaters, refusing treatments and finding time to fit in treatments with family daily activities, and have found the following advice helpful:
“If you’ve got a partner or spouse, try and share the responsibility of care – divide and conquer the treatments!”
“Treat your child the same as any other siblings – have the same behavioural expectations, punishments, rewards and rules. Treat them like a normal child, because fundamentally they are.”
Don’t forget that we are always here for you. We formed in 1968 as a parent support group and over 50 years later parent support still remains one of our fundamental services.
We have 12 regional branches across the country run by CF families for CF families. They can provide invaluable friendship, support and encouragement.
Our CF field workers are also here to support you and advise you on your journey.