Parenting is not an easy job at the best of times.

Parenting a child with a rare condition can add new considerations that you might not have had to think about before. Rare conditions vary in their intensity and impact, and even the same condition can impact different people in different ways.

Every child is unique, as are you as their parent. Although your experience of parenting may be different (to varying degrees) to the one you might have had in mind, it can still be very rewarding and meaningful.

A different life to the one you had imagined

When your child is first diagnosed with a rare condition, many parents describe feeling like their world turned ‘upside-down’. There can be a lot of unknowns, particularly at the start.

You may have all sorts of questions or worries about the future, and how they – and you – will cope.

When your child receives a diagnosis of a rare condition, you might find yourself grieving. This is the sadness of being obliged to ‘re-imagine’ a future where this condition will be part of their – and your – lives going forward.

Believing that the future can still be good (even if it is not what you imagined it would be) is all part of coming to terms with a diagnosis.There will also be people and organisations there to support you.

I was so angry this was going to be part of her, our, life now. But actually, we’ve all kind of got used to it. Sometimes it’s a problem, other times less so. It’s just our life.

Families come in all shapes and sizes

Solo parenting

Not having someone else to talk decisions over with, or help manage the day-to-day can mean that you are managing a lot. The feeling of it ‘all being down to you’ can be very stressful. If you are in this situation, building a good support network is particularly important for your emotional wellbeing.

Organisations like Gingerbread that support single parents can also be very helpful.

Co-parenting & step-parenting

There may be times when you feel unsure about your role in a child’s care, such as whether or not you should attend medical appointments with them. There are no right and wrongs in this situation. Starting with what a child or young person wants is the most important.

Family Lives provides a range of advice and information about becoming a blended family and step-parenting.

Same-sex or non-binary couples

If you are in a same-sex or non-binary couple you may find that professionals make assumptions about you or your family life. It can be helpful to let them know in advance how everyone in a family is related, and how you all like to be referred to.

Proud2bParents  is based in the north-east. They have lots of advice and support for LGBT+ parents, carers and their families, including different ways to become a parent.

Contact provides a range of support for parents of disabled children, including rare conditions.

Different ways to start a family, or have more children

Deciding to start a family or have more children can be an exciting time. It is no different when you are impacted by a rare condition, but there may be more issues to think about and to plan around.

If your condition is genetic, this might include considering ways to have a baby that does not pass your condition on. Different people have different feelings about this, and any decision about this will be very personal to you as an individual, and/or couple.

Some genetic conditions impact more severely than others. If you are affected by certain conditions, it is possible to consider ‘assisted conception’. This is a way to help you have a baby that does not carry a particular condition. There are different types of eligibility criteria for this on the NHS. Start by asking your rare condition doctor what might be possible for you and your condition.

Types of assisted conception include:

• prenatal testing
• PGT pre-implantation testing (a special type of IVF)
• using donor egg or sperm

Adoption is also another way to consider having a child, or more children. You can find out more from Adoption UK here.

Guys and St Thomas Hospital have more information about the different types of assisted conception.

It’s ‘who you are’ that’s important 

Depending on the rare condition that your child is impacted by, it will impact them (physically and emotionally) as a unique individual. Its impact may be very visible and apparent to others, or more hidden. Both can have its own challenges . 

Our society often encourages us to believe our value is based on what we can ‘do’, not on who we are.

As your child becomes more aware of their rare condition and potential ‘difference’ (whether visible or not) it’s important to build their confidence that they are loved and appreciated for ‘who they are’, not what they can ‘do’, or how they look. This is actually an important message for all of us!

Recognise you are doing your best

‘Parental guilt’ and ‘negative bias’ often mean we focus too much on the aspects of parenting where we feel we aren’t doing very well. In reality, it’s likely that you and your child are both probably doing as well as you can, sometimes under very difficult circumstances.

Connecting with others

Meeting other parents who have children with the same – or a similar – rare condition can help support your own mental wellbeing, and help you feel less alone.

You might also be able to pick up helpful practical strategies, tips and ideas for supporting your child with their particular needs.

• Rare-condition organisations sometimes offer support or peer groups for parents, and parenting skills workshops. These might be face-to-face, or online. You can be involved as much or as little as you like.
• Local groups for parents of children with special educational needs, disabilities, or with neurodiversity might also be happening in your local area. Your GP, library or social worker might have details. You can also check the SEN Local Offer of your Local Authority website.

Self-care isn’t selfish

It’s not easy to keep your own mental (and physical) wellbeing in mind, particularly when you are a parent-carer. Your needs might all too often become last on the list even though it is likely to be you who keeps the ‘show on the road’!

Your health and wellbeing is important not just for you as an individual, but also to help you look after those you care about.

When you are ‘giving out a lot’ emotionally, you need time to refill your ‘energy tanks’. These are both emotional and physical. We all ‘recharge’ in different ways.

I was starting to burn-out trying to keep on top of everything. Accepting I had limits didn’t come easy. It’s still not great, but I’ve made a few changes, let some things go a bit. I don’t feel quite so overwhelmed.

Time together and time apart

If your child has high or particular care needs it can be challenging to find services or people that you can leave them with.

When it is possible however (even for an hour or so) it means you have valuable time to focus on your own emotional and physical wellbeing needs. It also means your child also has the opportunity to learn, or expand, their communication and relating skills by being with that other person.

You might at other times benefit from re-connecting as a family away from your usual environment or routines. Days out and short breaks can be ways to have fun and just enjoy being together in a relaxed or supportive setting.

Who could help?

• Family and friends might be your first port of call.
• If you have a social worker, ask them for help and advice as to what additional support you might be entitled to, or is available locally.
• Barnardos provide a ‘short-break care’ search facility (by postcode) for parents of disabled children. This can include overnight care, weekend breaks away, or after-school clubs.
• The Sandcastle Trust provides opportunities for family fun and respite to help families build positive memories, strengthen family relationships, reduce isolation, and improve mental wellbeing and resilience.

Supporting siblings

Trying to balance the various needs of all your family members (including your own) might sometimes feel like you are being pulled in lots of different directions at the same time. There can be a lot to juggle, especially if your child/ren have high daily care needs.

A lot of adult siblings of people with disabilities or health conditions say that it has really shaped who they are. Many say they are very ‘tuned in’ and caring towards other people’s needs. These are great qualities to develop. It might also mean however, that they are sometimes better at putting other people’s needs before their own.

Managing ‘sibling rivalry and relationships

Siblings without a rare condition may not appreciate that their brother or sisters ‘day out at hospital with Mum’ is not necessarily fun. They will only be aware that their sibling had you ‘all too themselves’, and probably time off school to ‘go out’ (even if that was to a hospital appointment).

If a member of the family has behaviour that can be difficult, this might mean that family life can sometimes get fraught. Children can find it very unfair when they are expected to be more grown up in relation to a sibling with relational or behavioural difficulties, or particular care needs.

At other times, they may be anxious about how their sibling – or they – are seen at school, or by their friends. They may feel protective, but possibly embarrassed (and guilty) too.

Children do not always express their feelings verbally. Be aware that difficult feelings can sometimes be shown, either through physical health problems like tummy aches, or in the way they behave such as becoming more clingy, angry or quiet.

Ways to support siblings

• Try to make focussed time just with your child/ren who do not have a rare condition.
• Let them know it’s normal and understandable to have mixed or difficult feelings about their siblings from time-to-time.
• Let them know that when one person in a family has a rare condition, everyone is impacted in their own way.

Make sure they know (age-appropriately) what the rare condition is that their sibling has, and any other information about how it impacts them. This will also help them explain it to friends if they need or want to.

Acknowledge how family routines and responsibilities might be impacted as a result of a rare condition and that sometimes this will be frustrating.

SIBS has various resources and forums for siblings of disabled children.

Young Carers provide support groups and information for young people with caring responsibilities.

Unique has an excellent guide to supporting siblings of children with a rare genetic condition.

Unusual or difficult behaviour

If your child shows difficult or unusual behaviour, it is often a ‘communication’ of some sort. If your child is non-verbal, their behaviour will also be their main form of communication.

Unusual or difficult behaviour may also be your child’s preferred way of ‘self-soothing’ to help them to cope with feelings, or ‘sensory overload.’

However, difficult or unusual behaviour is not always straightforward to ‘interpret’ for any child. This can feel frustrating for both you and them.

Their behaviour may be:

• Biologically driven by the condition itself, or pain and discomfort.
• Emotionally driven by stress, anxiety or frustration.
• Developmentally driven as a result of ‘growing-up’ and needing to establish more independence.

Types of difficult behaviour

• violence or aggression (towards themselves, or others)
• regression (behaving in ways that are younger again in relation to sleep, or toileting etc)
• not wanting to be left alone, or with other people
• difficulty in behaving appropriately in public
• not being able to settle or sleep
• repetitive movements
• being very rigid about certain foods, behaviour or experiences

Your child’s behaviour might bring up a lot of challenging feelings for you as a parent. You might also at times feel embarrassed or upset by how other people respond to – or make assumptions about – your parenting skills.

It can be very hard to acknowledge times when you might not like your child very much (however much you love them), or times when you feel overwhelmed, or have ‘had enough.’

You won’t be alone in feeling like this.

Ways to cope

Understanding the reasons behind why your child is behaving as they are can help you cope, and also respond more effectively.

This can take time, and finding strategies that help won’t necessarily happen overnight:

• Talk to other rare-condition parents, healthcare professionals, and use research to help you work out what might be going on for your particular child. This is unlikely to happen overnight, but may become clearer over time. You know them best.
• Explore strategies you can use to manage different situations, or that help with particular behaviour. Finding the right approach can take a while, and may not work reliably. Just keep going.
• Meet other parents who are coping with similar issues even if they are not ‘rare parents’. Libraries, council websites and GP surgeries often have details of local support groups for parents of children with SEN, autism or ADHD etc.
• Hold in mind that not all difficult or unusual behaviour will be to do with your child’s rare condition. Consider wider possibilities too such as how things are at school (if they go), any changes that have happened recently, or how things are at home.
• A child Psychologist referral can be very helpful, but waiting lists can be long. Ask your rare-condition specialist, SENCO, GP, CAMHS or social worker who and where it is best to approach.

Cerebra produces guides for parents of children with brain conditions, but their strategies and techniques for behaviour are also very helpful across other rare conditions.

Family Lives provide helpful guides on understanding your child by age, or difficulty as well as support for parents and grandparents. They also have a helpline and online chat space.

Scope provides a helpful resource to working with schools to help manage challenging behaviour, and understanding any triggers behind it. They also run support groups for parents of children with disabilities.

Unique produce a comprehensive guide to managing a wide range of difficult and unusual behaviours, and techniques or services to help.

Moving on to adult health care

At some point, your child or young person may move to adult health and social care. We talk more about navigating and managing this transition here.