NF in the Family

We know that the toll on parents who have a child with a chronic condition is significant. As a parent you play a pivotal role as the key support for your child with NF, other child(ren) not impacted by NF, and your significant other. On top of this you will likely be the main source of information about NF and what it means for your child, family, and friends. 

You are your child’s best advocate in areas such as schooling, therapeutic interventions and even in the medical and healthcare system. Not to mention the impact it has on your own wellbeing. It is important to remember your own needs and ensure that the wonderful support you provide your family and friends is mirrored for yourself.

The distress felt by parents can impact the family’s journey when adjusting to a new diagnosis. Families have noted key challenges including the uncertainty of the condition, the impact of and potential for an altered appearance and managing others' reactions because of their lack of awareness.

The shift in your focus towards your child’s health and needs can dramatically impact upon family dynamics. We understand how difficult it can be for both you and your child, so in addition to our new diagnosis roadmap we’ve put some tips together to support you:

• Learn about your child’s diagnosis – the best way to tackle any uncertainty is to be prepared. Learn about NF, its significance, implications, and the diverse ways it can impact young people
• Build a routine – observe your child’s needs, and structure a routine that works for them and you. Consistency is important so your child knows what to expect, and everything remains manageable for you looking after them.
• Check-in with your child(ren) – it’s easy to assume that being a motivating and supportive parent will create a positive environment and a sense of normalcy. But research has shown that by doing this, parents may be less aware of a child’s concerns or distress. Always remember your perception of reality may not be your child’s experience, and check-in with how things are going with their health, education, and social relationships. This is important for both your children with NF and their brothers and sisters without the diagnosis.
• Build awareness – informing your close family, friends, your child’s school, and anyone you are comfortable in talking about the diagnosis and explaining where you are at in the journey to keep people’s reactions and comments in check. It will also let them know how best to support you. You might like to try drafting some letters that you can hand out to people to explain what NF is, and how it impacts your child. We can help with you this (contact)
• Look after yourself - looking after your children and their needs may automatically take over your time. This may impact your health and wellbeing. It is important to take time for yourself, and share the responsibilities with your partner, family members or another trusted carer (if available). Go for a walk, treat yourself, go shopping or go to the park and read a book.
• Be mindful of your other children - siblings may be hesitant in disclosing their difficulties to you in fear of increasing your burden, and their needs may be unknowingly overlooked. Make sure you check in with them and see how they are coping.

The relationships held between brothers and sisters are unique, but also complicated and ever changing. When this relationship also includes a rare genetic condition the relationship and broader family dynamic can become quite different in positive but also not so positive ways.

I grew up with an older brother and the bond between siblings is unlike anything else, and it can be a real journey to accept what that bond is once you mature into it. Because it's not always what you want. It's not always what you expect. It's not always what you imagined or hoped. But it's the most important thing in the world."

Ben Schnetzer

The health and wellbeing of siblings can at times be overlooked due to the effect of chronic health conditions of a family member. The higher caregiving demands placed on parents may results in siblings and other family members receiving less attention. This can often lead to siblings feeling that they are unimportant and even neglected. The constant disruption to their life due to the frequent hospital or doctor visits for their sibling can also cause anxiety and frustration for them.

Siblings of children with chronic conditions, like NF, may also hide their distress from their parents/carers to avoid adding more pressure and stress to their parent’s plate. They may feel guilty about having these feelings and may feel that they don’t have the right to complain when their sibling is unwell or requires additional care.

Siblings may feel:

• Anger towards their parents because they feel ignored, or their needs are unimportant
• Resentful towards their sibling because they have to do more of the chores around the house and they receive less attention than their sibling.
• Guilt because they are healthy and can-do things their sibling cannot. As well as experiencing resentment /anger towards their family members
• Nostalgia for a time before the sibling was unwell or for a time before the sibling was born

 If your child is experiencing these feelings, it can be very stressful for them, and they may not know how to express their emotions to you. Some signs of concern to look out for include:

• Changes in routine - in sleep patterns/waking up in the middle of the night or change in appetite.
• Physical symptoms - such as stomach pains, nausea, headaches, or tension.
• Behavioural changes or fluctuating moods.
• Regression - returning to past behaviours that they had already outgrown.
• Difficulty in education - trouble completing schoolwork or pushing themselves too hard.

If you are concerned your child is experiencing distress due to their siblings' condition, there are some things you can do to help them managing their emotions.

• Find balance between the needs of your child with NF and that of your other children.
• Spend some one-on-one time with each of your children
• Find an activity or interest that you and your child can bond over

It is also well known that brothers and sisters of children with a chronic condition who are kept in the dark around their siblings' diagnosis can result in an increased level of anxiety. This is because children are fearful of what they do not know and may overestimate or misunderstand their brother or sister’s diagnosis. Therefore, the best thing you can do to help your child who may be experiencing this anxiety is to include them in their siblings' health journey in an age-appropriate way. This may include:

• An explanation - go through the sibling’s diagnosis and what kind of things to expect in an age-appropriate language.
• Opportunities for questions - let your children ask questions and answer them as honestly as possible.
• Bring them to doctor appointments - allow your child to listen or participate in the conversation if appropriate.
• Acknowledgment - recognising their anxiety and fear that surrounds the diagnosis and reassuring your child where possible.
• Inclusion in decision-making - this is for your older children. You may want to involve them in any decisions that are made surrounding the diagnosis.

Siblings Australia is a good source for more detailed information about the effects of chronic conditions and disability on siblings at various life stages. We also have an information sheet “Talking to Children About Neurofibromatosis”

Books such as “The NF Hero” which you can download, or purchase may also be useful to help explain NF to younger children.

"Grandparents are like starts. You don't always see them, but you know they're there."

Learning that your grandchild has NF can be challenging. You might never have heard of it before and therefore learning of the condition’s complexities can be a shock.

Parents of children with NF highlight the challenges they experience in accessing social support, especially due to a lack of understanding of what a diagnosis is all about. Whilst we have a dedicated page for you to understand the implications of NF, taking an active role in showing your children and grandchildren that you’re there for them is likely going to allow them to feel like they have a shoulder to lean on. It’s the small things, which for many of us don’t take much time at all, that families with NF will appreciate. Here are some tips that you might find useful:

• Address NF directly - ask questions to understand the significance and implications of NF, and don’t tiptoe around it.
• Offer your time - take your grandchild to a hospital appointment or to the park to give mum or dad a break, or even go with them to offer moral support.
• Check-in – call them up to see how they’re doing and have a friendly catch-up to give them a few minutes away from the hustle and bustle of their life.
• Help – housework on top of caring for a child can be time-consuming and tiring, so why not cook a meal every so often for them and deliver it to them or even invite them over.