Advice for fathers

17 mins read

This advice applies across the UK.

Becoming a dad is a big change in your life. Being a dad to a disabled child involves more changes than you might have imagined, and it can feel overwhelming.

Dads say they play a mixed role in caring for their child. Some deal with most of the appointments. Others say that their partner becomes the ‘keyworker’, dealing with health and education services while they work to pay for extra costs.

We talked to a number of fathers about their experiences to develop this information. It is meant to help you get started in finding support and information. We hope it helps you.

Information for new dads

If you have a premature or sick baby, or have just received a diagnosis for a new baby, then you might find the charity BLISS helpful. They have information and advice for parents with children born premature or sick.

“It took a while to come to terms with the shock of the diagnosis. We went home after that dreadful day, closed the door and shut out the world. Years later, I see things very differently. I have a wonderful son.”

Advice for fathers

• Don’t trust everything you read on the internet. Read our tips to finding reliable medical information online.
• Gather knowledge about the services available for your child and how they all work. Remember you can give our freephone helpline a call.
• You may find it helpful to contact a charity or organisation that specialises in supporting children with your child’s specific condition. Our A-Z of medical conditions has information on more than 400 conditions, plus the support groups for them.
• Spend some time with friends, or consider joining a parent support group to meet other fathers in your area. Local dads groups may organise football or other recreational activities, and they are likely to know about services and support in your area.
• You might find that letters and information don’t always get sent to you. Make your position as a father clear to all professionals. Ask for written information about decisions so you can keep updated. Read everything you can to find out what’s going on.

“I spent hours looking for information on the internet. In the end I realised I was just torturing myself. My time is better spent with my children.”

Tips from dads for dads

Many parents say they value hearing from other people going through the same experiences. These tips come from other fathers of disabled children:

• Adore your child for their individuality and be proud of the things they can do.
• It’s normal to feel confused, dazed, angry and annoyed. Don’t keep your problems or feelings to yourself – share them.
• Make contact with other dads whose children have the same condition. Talking to someone who knows what you’re going through is priceless.
• There is no such thing as a stupid question – don’t walk away until you understand.
• Don’t be too proud to accept help and take advice. If you qualify for benefits or grants, you deserve them, so make use of them.
• Never be embarrassed to explain your child’s disability. Other people can be embarrassed by disability. This is their problem, not yours.
• Make time for you and your partner. Even if all you do is talk about your child, it’s healthy to occasionally do this without your child there.
• Make sure you get enough sleep – tiredness causes irritability and arguments. And make time for yourself – it’s not selfish, but essential.
• It’s ok to negotiate on appointment times if an early or late appointment will fit better around your work.

“You need a sense of humour – if anyone else says we’ve been ‘chosen’, I’ll be up for murder!”

Relationships

You and your partner

All relationships go through periods of change and challenge. Having a disabled child may put pressure on your relationship with your partner, or you may react in very different ways to issues concerning your child.

It is important to keep talking and recognise that at times you might need to compromise. Talking to others about your relationship is fine. But remember, the main person you need to talk to is your partner.

We have lots of information about looking after your relationship.

“Acknowledge your partner when you come home instead of going straight to your child. Your kid will have been well looked after, whereas your partner may need some tender loving care.”

Making decisions

All the fathers we met said there was a real difference in the way that each parent handles information and situations. Most felt their partners wanted to know everything, whereas they were only interested in the key facts. Your partner may be the one who talks the most with professionals and service providers.

Lots of the dads we met were keen to mention that “we make decisions jointly” They felt there is a real need for a lot of talk and discussion between parents.

It is important to try and find a way through that you are both happy with. Talking about how each of you handle situations is important. Remember that all families are unique and each of you might use different methods.
Our relationships information talks about recognising each other’s role and ways of coping, managing differences and what to do if things break down.

“Lots of information goes to my wife. Make it your business to read the letters too and find out what’s going on.”

Having a break

Having time together as a couple can be really valuable, so make use of any help that”s available.
Social service departments (social work in Scotland) are legally responsible for arranging support for disabled children and their carers.

You have a right to have your child and family’s needs assessed for services, including short breaks for your child. Short breaks can be a way of giving your child different experiences away from you, helping their learning and independence. They can also give you and your partner a break from your caring responsibilities so you can spend time with each other or your other children.

Read our information about taking a break and getting services and support from your local authority.

Top Tip

Although it may be difficult, make time to have a date with your partner every now and then. It will be hard not to talk about the kids, but see a film, have lunch or make sure you find something else to concentrate on.

Time for the two of you is important, even for just a couple of hours.

“Prioritise your relationship – no one else is going to do it for you!”

Relationships with your other children

If you are a dad with other children, you may find you need to juggle your time even more.

Most families recognise that siblings are often mature for their age and enjoy being involved with their disabled brother or sister. However, it is important to allocate time to do something just with them. Make sure that siblings have the information they need to understand the disability and explain it to their peers.

Top Tip

Plan times to spend with your other children and stick to it.

“Give children the words so that they can explain disability to their friends.”

Some siblings benefit from attending local young carers groups. They’ll have the opportunity to meet other children in similar circumstances and do fun activities.

Find information on supporting siblings, plus local sibling or young carers groups.

“It helped to know that I’m not alone with a disabled brother or sister.” Sibling

Dealing with other people’s reactions

Often dealing with how other people react to your child’s disability can be one of the most difficult issues. The best way is to approach other people directly and talk openly about your child being disabled.

You might find that people you work or socialise with do not know much about disability. Share any information that you have with them, and say that you are still learning too. You might also have to prepare yourself for the fact that some people may try to avoid you. Remember that before your experience as a dad of a disabled child, you might have felt this way too.

Sometimes people will feel as though they have to offer advice. Tell them what support you want. This may make it easier to communicate with each other and for them to ‘be there’ for you when they may have little or no experience of disability themselves.

“Two years ago I wouldn’t have known what to say to other dads either…”

Support in the family

Support and understanding from other family members, such as grandparents, can be a lifeline. Emotional support can help you feel understood. Practical help can create time to deal with essentials or opportunities to spend time together with your partner.

Some fathers can feel disappointed by the lack of help they receive. It isn’t always easy for family members to know what to do or how to help. It may feel that you have to support them. It’s okay to seek advice from others about this.

“I couldn’t manage without grandparents. Families can really help if you are lucky enough.”

Support for you

Support from other dads

Information from others who have been in the same situation can be a lifeline. A support group is a good place to start. Support groups don’t only have to be about sitting and talking. One group set up a football team for their children, so the children could play sport while the dads talked. Other dads meet in the pub to play darts.

If there is no group in your area, you might want to start one when you feel ready. We have information and guides about how to set up a support group.

“You need local support from people who ‘get it’ – only parents who are in the same situation can really understand.”

Support from professionals

Sometimes there is a key professional who can open the door to lots of information or contacts.

Local authorities have a duty to provide certain services to disabled children. They have teams for children with disabilities who can carry out an assessment of your child and family’s needs. It is helpful to familiarise yourself with the services available for your child and how they all work.

Remember, you can give our freephone helpline a call.

Local carers centres

Many local authorities have a Carers Centre. They will know how things work in your area and can guide you to key services and suport.

Carers Centres often run a range of services, for example money advice and form-filling, support groups, wellbeing programmes, training, days out and so on. They can be a good way to meet other parents and get support.

You can search for a local Carers Centre on the Carers Trust website.

Talking and advice services

If you are struggling and looking for strategies to help, our Listening Ear service gives emotional and practical support. We offer hour-long 1-1 telephone appointments with a family support adviser – all parents of disabled children and young people, with a wealth of experience.

You might find a professional counselling service helpful. Your GP should be able to tell you about local services. The British Association for Counselling and Psychotherapy also has details of qualified counsellors. Some employers also have a confidential counselling scheme for employees, and some Carers Centres also offer free emotional support.

Challenges

Fathers tell us that they usually reach acceptance of their child’s disability at a different time to the child’s mother. That often needs honest discussion, which can be challenging for both couples who are together and separated parents.

Fathers often see their role as one of providing strength and stability, maintaining normality during a period of uncertainty and very often ensuring their employment continues. As a result, they are often absent from meetings, which partners, family members and service providers can see as indifference.
As a dad, you may feel you have a dual role. You may need to offer support, but also provide the practical help when your partner needs it.

Mothers often take on the role of ‘keyworker’, dealing with all the professionals and sometimes becoming overwhelmed by a system that is complex. Your partner may ask for support from you, mainly when trying to access a particular service, therapy or adaptation. Sometimes, without prior knowledge of decisions previously made, fathers will have to ‘enter the fray’ which can be very daunting. Many dads say they have been tripped up by simply not understanding the complex systems surrounding their child – who does what and when do they do it?

“We spent the first months in a state of anxiety and shock. The nurses were fantastic, but then we were on our own, and that’s when you don’t want to say how scared you are.”

Top Tip

It is worth spending time getting knowledge together. In other words, do your homework. Make sure professionals are clear you are the father. Ask them to send written information about decisions to you. Then it will be clear for all how to keep you updated.

“Dads often find themselves without the right information. Professionals don’t tell me what’s going on because I’m not at the meetings and her mum can’t remember everything they talked about. I’d say to most fathers – make it your business to find out what’s going on.”

Balancing things

Balancing work with caring responsibilities can leave little time to devote to yourself or your partner. The unpredictable nature of some conditions, and difficulties getting time off work for hospital appointments, means you’ll need to share and discuss information between yourselves. Think about ways you can best support each other, particularly when you need to make decisions about your child.

“It can be a balancing act between keeping your employers sweet, spending time with your family, keeping abreast of what is happening with your child, and supporting your partner.”

Lone or single fathers

Some dads become separated from the mother of their child, and some become the main carer for their disabled child.

If you are or will become the main carer, it is important to access as much information as you can. Call our freephone helpline on 0808 808 3555 or see our list of useful organisations. Remember to share what you find out with other members of your family.

Stepfathers

Stepfathers need just as much information and support as any other father – perhaps more when they come into a child’s life without experiencing all of their history. If this is you, you might our information for families helpful.

Charity Family Lives has support for stepfamilies, tips on family life, parenting and teenagers.

“I found he has most of my interests – cars, lorries and motors in general. We have more in common than his real father and certainly more than his mother! I married into the perfect family.”

Work and finances

Working parents have a legal right to take time off in certain circumstances, such as paternity leave, parental leave and flexible working. Check with your employer for copies of their staff handbook or relevant policies.

Charity Working Families also have lots of resources on employment law for parents and carers.

It’s important to find out what financial support you can claim as the parent of a disabled child. This includes:

• Disability Living Allowance (DLA) in England, Northern Ireland and Wales or Child Disability Payment in Scotland.
• Personal Independence Payment (PIP) in England, Northern Ireland and Wales or Adult Disability Payment in Scotland.
• Carer’s Allowance in England, Northern Ireland and Wales or Carer Support Payment in Scotland.

Read our information on benefits and tax credits you may be able to claim.

You may also be eligible for financial help like grants and welfare assistance schemes.

Charity National Debt Helpline offers free, confidential debt advice if you are struggling to manage.

“Most people at work have been either overly kind or ignored it – I’ve made a point of bringing it up, explaining her disability and my shock, which has made it easier. It’s a classic ‘elephant in the room’ situation.”

One father’s story

“Ben has Morquio Disease”

“When Ben was born, I made an effort to avoid contact with support groups. They were for people that needed support, and I certainly didn’t! I was facing up to things and planning for the future, being sensible and logical — and miserable.

“I didn’t feel sorry for myself. Nor did I once think, ‘why me?’ So therefore I was coping. I flew a banner that stated Ben’s attitude to his disease would be a reflection of mine. So I made sure that my attitude was positive. On the inside, I was contorted with grief.

“Ben grew – not quickly, but he grew. He carried on walking – not very quickly, but he walked. He played football, swam, canoed and rode his bike. Ben talked and, my word, he talked. I never expected so many questions. His wit and intelligence amazed me.

“His reaction to his now obvious set of disabilities made me burn with pride. I had never figured that Ben would appear to be facing his ‘problem’ so positively. I was also acutely aware that my grief was based on how I imagined Ben would feel about this disease, and in reality there was no way that I could foresee how he would feel. With Ben feeling positive, we could all feel positive.

Facing fears for the future

“I plucked up the courage and decided to attend a conference. Yes, we had heard of the conference and even seen the photographs, but had never wanted to go. I really didn’t want Ben to see how things might turn out. I didn’t want to see how things might turn out. But I did want to see how research into the control of the disease might be progressing.

Finding hope

“We met other people with Morquio disease; we met people with all manner of Mucopolysaccharide (MPS) diseases.

“We met parents and carers and specialists. In speaking to people, we found support. I found support and only then realised we had always needed it. Not in any cathartic way, just to know we weren’t alone. And we weren’t. We found hope. We found inspiration. Ben has Morquio disease. That’s just the way it is. He has a disease. A disease that at the moment is incurable. We are a family. We are not your usual family. One of our three boys has Morquio disease. There is nothing that we can do about it, so we mustn’t let it eat us up. We can, however, learn to live with it. It is not always negative.

“We have all come to know Morquio disease, but none more closely than Ben. He amazes me and I love him deeply. I will always look up to him.”

Morquio disease is part of a group of rare disorders called Mucopolysaccharide diseases, each caused by a different enzyme deficiency. In most children it restricts growth and can cause progressive mental as well as physical disability. Support is available from the Society for Mucopolysaccharide Diseases.

Related information

Local support & legal advice

Information about the help available in your area, from local advice organisations to parent support groups.

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Work

Information and advice on working and childcare, including benefits in work and finding childcare.

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