Last updated October 2006

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Introduction
Research on fathers of disabled children
The role of fathers
Relationships with partners
Other parental issues
Dealing with employers
Benefits, tax credits and other money matters
Support for fathers
What can services do to include fathers?
Tips for dads by dads
Dad's stories
Useful Contact Details
Advice Checklist

This factsheet gives some practical information to fathers of disabled children and children with rare disorders or long-term medical conditions. It also shares the experiences of other fathers.

Having a disabled child affects all members of a family. Mothers and fathers can sometimes react in different ways to the news that their child has a disability or medical condition. As a father of a disabled child, you may find your partner or other members of the family looking to you for support at a time when you have to adapt to a new and sometimes difficult set of circumstances. We hope that this factsheet will help you learn more about the experiences of other fathers, dispel some of the myths and provide some useful information to support you along the way. We met a number of fathers at two workshops held in Swansea and Bridgend who helped us in writing this factsheet. We thank them for their insight, wisdom and help.

There has not been much widespread research on fathers of disabled children. However, there have been a few small scale studies which give us some insight into what it is like to be the dad of a disabled child.

In 1998 [1], research into the experiences of fathers of disabled children was carried out in West Lancashire. Twelve fathers were interviewed about their experiences of a number of different aspects: the birth of their child, school, family holidays, relationships, their marriage, advocacy, childcare, the ups and downs of parenting, and the exclusion that they felt from support services. One of the consistent comments fathers made was that they felt excluded from certain aspects of their child's life. For some fathers this had started at birth, when partners were told about their child's disability without them being present. Generally, fathers felt the support systems that were in place were beneficial for their partners, but not for them. They felt that some type of support for fathers would have been or would be helpful.

Research by the Handsel Trust [2] showed some similar observations. Improved support, information and the opportunity to access services, could lead to fathers feeling much more involved in the care of their child. Carpenter [3] reports on further research to look at how schools were involving fathers of children with special educational needs (SEN). The schools admitted that they could improve their practices by arranging home visits when fathers were there and holding review meetings in the evenings. Generally, it was felt that 'when fathers could be enabled or encouraged to attend, their contribution was invaluable.'

A project called 'Recognising Fathers' is being run by The Foundation for People with Learning Disabilities. For more information on this project see Useful Contact Details.

The dads we met all agreed that their role was a mixed one. Many highlighted the fact that they needed to be the breadwinner, particularly because of the extra costs of caring for a disabled child, but this often led to them being absent from meetings or from carrying out much of the day-to-day care of their child. However, it seems the problem often lies with the service providers - fathers who are not seen at meetings are presumed to be not doing anything! Dads, though, might see their roles differently; as one said, 'Dads are the sparks that push. Dads often are pushy about moving their child on; mums have had it all the time and may get despondent.'

As a dad you may feel you have a dual role; you may need to offer support but also provide the practical help that is needed.

How does it feel to be a father?

Here are some of the things the dads we met said:

'It just hits you - you don't hear anything else other than the diagnosis. It took about two days before I looked on the internet.'

'The way I feel about her is pride; she is special.'

'We knew from hour one that he had Cerebral Palsy. We knew we just had to get him home and survive with him.'

'I cried for half an hour because he took his first steps.'

If you have a premature or sick baby, or have just received a diagnosis for a new baby then you might find, 'Facts for fathers' a factsheet produced by BLISS helpful. Web: http://www.bliss.org.uk

The needs of fathers

Like any parent, when you find out your child has a disability the first thing you look for is information. Most of the fathers we met felt this was the most important issue - but they had all learnt that it was vital not to forget the child in their search for information. As one father reminded us, 'When we were in the hospital we kept watching the bleeps on the monitor. The nurse came in and said don't worry about looking at the monitor so much, the child is here on the bed.' Another dad said, '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.'

You might find it helpful to get information from others who have been in the same situation. A support group or national organisation which specialises in a particular condition might be a good place to start. Contact a Family can help you with this.

Most of the dads we met felt their most important need was to be listened to - to have someone that would just be a sounding block. Try to make use of all your support networks; this might be your wife or partner, family, friend or neighbour.

• Try not to keep your problems or feelings to yourself. Share it with someone that you trust as it may help you come to some solutions.
• Try to find some time to be with your partner without your child.
• Try to take care of yourself as you cannot be as supportive of your family if you're tired and stressed.
• You may find it helpful to spend time on your own or with some friends doing things for yourself.
• Remember that it's OK to ask for help from the people around you, or call Contact a Family as we may be able to find you a local service that can help.

Lone fathers

Some dads become the sole carer for their disabled child. We met one dad whose wife had died the year before and he wanted us to emphasise: 'From a dad's point of view what a big role mums play - what it really means to be a mother. I didn't know how to sew socks or organise things.' For different reasons, other dads might take on the sole care of their children. It is important to access as much help, support and advice as you can. See the Useful Contact Details section.

Stepfathers

'My new partner and I thought it would be useful for you to include a section on stepdads in your Father's factsheet. Those wonderful men, not knowing what they are letting themselves in for when they fall for a single mum with special needs children. What a steep learning curve!'

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. There is particular support for stepfamilies - see the Useful Contact Details section.

Having a disabled child may put pressure on your relationship with your partner or you may react in very different ways to the issues concerning your child. It is important to talk them through and sometimes you might need to compromise. Lots of the dads we met were keen to add that 'Decisions are made jointly.' They felt there is a lot of talk and discussion between parents. Dads might sometimes feel a bit uninformed because their partner sees all the information first and may filter it. As one dad said 'Lots of information goes to my wife. She opens all the letters and information we get that explains things like benefits.' This might mean that a wife or partner liaises with services while dads are at work or doing other jobs. There also seems to be a key difference in the way that mums and dads deal with information. Most men felt their wives wanted to know everything, whereas they were only interested in the key facts.

Going out or pursuing your own interests might cause a few difficulties, but if you do, it can make all the difference to how you feel about your situation. Having some time together as a couple can be really valuable so make use of any help that might be available. One father said 'Sometimes it's hard to go out together and when you do, you talk about the kids!'

All the fathers we met said there was a real difference in the way that situations are handled by each parent. 'There is a difference between partners about when and what is discussed about the child's disability.' It is important to try and find a way through that you are both happy with. Do also remember that all families are unique, each of you might find different ways through difficult times.

Relationship breakdown and practical issues

If you have a partner and are having a difficult time in your relationship, you may find our relationships factsheet helpful. This is full of tips from parents with disabled children on relationship issues, and has practical information about services and benefits which can help relieve some of the stresses in a relationship. A free copy can be obtained from the helpline.

This next section looks specifically at some of the legal and practical issues that dads may face when the relationship has broken down completely and dad is now living apart from the children.

Maintaining contact with children

No longer living under the same roof as your children will inevitably affect the level of contact you have with them and it will usually be necessary to agree contact arrangements with your former partner. Legally, a person with parental responsibility cannot be denied contact with their child without the intervention of the courts. Of course it will usually be best if both parents can discuss and agree appropriate arrangements informally. Perhaps a trial period can be agreed, and the arrangements reconsidered after a fixed period? Where an agreement can't be made, it may be necessary to consider family mediation and getting legal advice.

Parental responsibility

The law presumes married parents both have parental responsibility. Unmarried mothers have parental responsibility but not all unmarried fathers do. Unmarried fathers can acquire parental responsibility, for example by entering into a parental responsibility agreement with the mother. A civil partner or member of a same-sex couple can acquire parental responsibility in a similar way.

Family mediation

Family mediation services help separating or divorcing couples to resolve disputes and reach their own decisions on specific issues, particularly matters involving the children of a relationship. They can also help with disputes around finance and property. Although often helpful, mediation is not a substitute for legal advice. Services vary from area to area and there may be a fee (although help under publicly-funded legal services might be available).

The Family Mediation Helpline can provide general information about family mediation and provide contact details for mediation services in your area. Family Mediation Helpline, Tel: 08456 02 66 27 e-mail: info@familymediationhelpline.co.uk Web: http://www.familymediationhelpline.co.uk

Getting advice about legal ways of ending a relationship and other legal disputes

Couples who were cohabiting, or are married but do not wish to formally end the relationship, including civil partners, might need legal advice if no agreement can be reached on issues concerning children, property and money. There are several ways to end a marriage legally, the most common being divorce. If both parties agree to divorce (i.e. it is 'undefended') a solicitor will not usually be needed and a local citizen's advice bureau (CAB) should be able to help with the petition. If a divorce is defended, or there are other issues in dispute concerning children, money or property, then it will be necessary to consult a solicitor. The same applies to civil partners wishing to formally end their relationships (this is sometimes called 'dissolution' rather than 'divorce'). A local CAB should be able to help you locate a solicitor in your area and advise you about any legal aid which might be available to help with the costs.

Child support

Both parents (biological or adoptive) are legally responsible for a child's financial support. If one of the parents does not have day-to-day care of the child, s/he may be liable to pay child support maintenance. Child support is administered by the Child Support Agency (CSA), who can calculate how much is due and set up payment arrangements through the CSA.

A parent with day-to-day care of a child will usually have little option but to agree to a CSA assessment if they claim benefits like Income Support (otherwise they may lose benefit). Other people can ask the CSA to make an assessment, including a non-resident parent (NRP) and, in Scotland, a child can also apply, although in limited circumstances. The CSA can only consider applications for child support in respect of children under 16 years; some 16-17 year olds registered for (but not yet taking part in) work or work-based learning for young people; or under 19 years if he or she is still in full-time non-advanced education.

The assessment is complex and may cause a lot of upset between you and your former partner. Also, you may find that interim payments may be required while an assessment is carried out and these can be disputed when the level of child support maintenance is finally agreed. A local CAB can help with these issues and advise on how to challenge the assessment if you are unhappy with the outcome.

The CSA operates a national enquiry line. Calls are charged at the local rate and the line is open Monday - Friday, 8am - 8pm, Saturday, 9am - 5pm. Tel: 08457 13 31 33 Web: http://www.csa.gov.uk

Benefits and tax credits when a relationship has ended

If you are in receipt of benefits or tax credits you may need to seek advice immediately following the break up of a relationship. This is because some benefits are assessed and paid for the whole family, and a change in the family circumstances like a person leaving the family home will affect entitlement. With tax credits you risk a fine if you do not stop claiming when you stop being part of a couple (note you might be able to claim again as a single claimant). From December 2005 the benefits and tax credits systems also recognises gay and lesbian couples who live together whether or not they have registered as civil partners. For more information about benefits and tax credits ring the Contact a Family helpline. The helpline can also put you in touch with a specialist benefits adviser.

Relationship with your other children

If you are a dad with other children, you may find you need to juggle your time even more. As one dad told us, 'It's hard trying to give all the children equal attention.' Most families recognise that siblings are often mature for their age and do enjoy the opportunity of being involved with their disabled brother or sister. However, it can help the sibling if you allocate time spent doing something just with them. Make sure that siblings have the information they need to understand the disability. Another dad told us 'Give children the words so that they can explain disability to their friends'. There is now a lot of information written for siblings by some of the national specific condition organisations which your children might find helpful. Some siblings have benefited from attending local siblings support groups, or a young carers group, where they have the opportunity to meet other children in similar circumstances. For information about local sibling or young carers groups, or if you would like a copy of our factsheet 'Siblings' please ring the Contact a Family helpline.

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 son or daughter having a disability. You might find that other people ask awkward questions like 'Didn't you know your child was disabled before they were born?' These can often be best answered with stock replies such as, 'My daughter's disability was caused by complications at birth.' You might find that other people you work with or socialise with do not know much about disability. You might also have to prepare yourself for the fact that others may try to avoid you. Remember that before your experience as a dad, you might have felt this way too. As one dad told us, 'Two years ago I wouldn't have known what to say to other dads either.'

For those dads who work, finding a balance between work and home life might be a challenge. One dad said, 'We have to use a lot of annual leave for meetings.' It is important to know your rights with your employer so that you can take the time off if you need it. A low level of awareness about current employment legislation, for parents generally and specifically in regard to disabled children, was found amongst the fathers responding to a survey conducted by Contact a Family. The survey also found that many fathers had changed their work pattern, or given up working all together, in order to support their disabled child.

Fathers have a range of employment rights which they can use including:

• Parental leave;
• Paternity leave;
• Time off for dependants;
• Adoption leave;
• Flexible working.

Many working parents have the right to take parental leave. This is the right to take time off to look after your child. Parents with disabled children are entitled to 18 weeks leave for each disabled child, and 13 weeks for non-disabled children. The leave can be taken up to the child's fifth birthday, or eighteenth birthday if your child is disabled (your child is considered disabled for parental leave rights if they get Disability Living Allowance).

In most cases parents must take the leave in blocks of one week, but in the case of disabled children leave can be taken in multiples of one day. There is no statutory right to pay during parental leave.

Paternity leave

To be eligible for paternity leave fathers need to have worked for the same employer for twenty-six weeks ending with the fifteenth week before the baby is due. In addition the baby must have been born after 6th April 2003. Fathers are entitled to take either one or two consecutive weeks up to the 56th day after the actual or expected week of the child's birth. During the leave fathers are entitled to receive £108.85 or 90% of earnings, whichever is less, as statutory paternity pay.

Adoption leave

Fathers who have worked for an employer for 26 weeks up to the date of being matched with a child are entitled to take up to 26 weeks ordinary adoption leave, which is paid at £108.85 per week or 90% of salary, whichever is less. Fathers can also take an additional 26 weeks unpaid leave. Fathers can begin the leave on the date of placement or a fixed date up to 14 days before the expected date of placement. This leave is not available where a child is not newly matched e.g. a step-parent adopting a partner's child. Only one partner in the relationship is able to take adoption leave.

Time off for dependents

This is a right to take time off, usually a day or two, to deal with an emergency, not when a person knows in advance that a problem will arise. This right is available to all employees regardless of length of service. Situations covered by this right include when a child has an accident or when there is a breakdown in care arrangements. There is no statutory right to pay during time off.

Flexible working

This is the right to apply for a change in your working pattern, which may be to work from home, reduce the hours you work or change the times you work. To be eligible fathers must have worked for the same employer for 26 weeks prior to the application being made. Fathers, as well as mothers, have a right to apply for flexible working, although an employer can refuse the request if there is a business case. Parents with disabled children can make an application at any time until the child's 18th birthday. It is important when considering a change in work pattern to also look at the effects on the family's finances. More information about benefits can be found earlier in this factsheet.

Further information about these employment rights can be found on the Government websites at Web: http://www.dti.gov.uk/employment/balancing-work-family-responsible/work-families and Web: http://www.tiger.gov.uk

If you would like more information about employment rights the following organisations can help:

ACAS (Advisory, Conciliation and Arbitration Service) Offers a free confidential advice service to employers and employees. Tel: 08457 47 47 47 Helpline Text: 08456 06 16 00 Web: http://www.acas.org.uk

Labour Relations Agency offers an impartial and confidential advice service to employers and employees in Northern Ireland. Tel: 028 9032 1442 Web: http://www.lra.org.uk

Contact a Family also produces a factsheet 'Working' which includes details of employment rights and benefits for working parents.

As the father of a disabled child, you may have a whole host of information needs. The dads we spoke to said that having information about finances would have eased the pressure on other parts of family life.

Making sure you claim all the benefits you are entitled to can help ease some of the other pressures on family life. We have outlined below three of the main benefits families can claim. However, for detailed advice on the full range of benefits you should phone our free helpline on 0808 808 3555. We employ a welfare rights specialist who can advise on any aspect of claiming benefits and tax credits. We also produce a free factsheet on Benefits, Tax Credits and other financial help.

Disability Living Allowance (DLA)

DLA is the main benefit for disabled children. A claim can be made for each disabled child in your family. It is not means-tested, so you can claim regardless of how much income or savings you have. If your child is awarded DLA this may lead to an increase in any means-tested benefits or tax credits you get.

There are two parts to DLA - a care component and a mobility component. Your child may be entitled to one of these components or to both. The care component is for children who need extra care or supervision because of their disability. It is paid at one of three rates depending on your child's needs. It can be paid from three months, or from birth if your child's condition is terminal.

The mobility component is for children who need help in getting around. It is paid at one of two rates. The lower rate is for children who can walk but who need someone to supervise or guide them out of doors. The earliest that this can be paid is from the age of five years. The higher rate is for those who are either unable to walk or who have great difficulties in walking. It can also be paid to children getting the high rate care component and who have a severe mental impairment as well as severe behavioural problems. The earliest that this can be paid is from the age of three years.

You can get a DLA claim pack (DLA1 child) by calling the Benefits Enquiry Line on 0800 88 22 00. They will date stamp the form and you will have 6 weeks to complete and return it. This allows benefit to be paid from the date the form was requested. To maximize your chances of being awarded DLA it is usually best to get help with the form from a local citizen's advice bureau (CAB) or disability advice project since it is long and complex.

Carer's Allowance (CA)

If your child gets the middle or highest rate of DLA care component, you or your partner may also be able to claim CA as their carer. In order to qualify for CA you must be:

• Caring for your child for at least 35 hours per week;
• Over 16 years of age and not in full-time education (i.e. a course involving 21 hours or more supervised study).

If you work you must earn no more than £84 a week (after taking off certain childcare costs and other expenses).

If neither you nor your partner are able to claim CA (e.g. because you both work and earn too much), someone else who helps care for your child may be able to claim instead.

CA cannot be paid at the same time as Incapacity Benefit, Maternity Allowance, Bereavement Benefits, contribution based JSA or the State Retirement Pension. However, a claim for CA may still be worthwhile even if it cannot be paid, since it can help you to qualify for some means-tested benefits.

CA is claimed on form DS700, available from the Benefits Enquiry Line (see above) or local benefits office. You should lodge for CA within three months of getting the decision on the DLA claim. This will ensure full backdating to when DLA started.

Tax Credits

There are two types of tax credit.

Child Tax Credit (CTC) can be claimed by anyone with a dependant child whether they work or not. You may get a higher amount of CTC if you have a child with a disability. CTC is paid to the main carer, which will usually be your partner if you have one.

Working Tax Credit (WTC) can be claimed by families in work on relatively low incomes. It is normally paid to the main earner in the family. In order to claim either you or your partner must be working for at least 16 hours a week. WTC can sometimes include help with certain approved childcare costs.

Although tax credits are means-tested you can have a taxable income of up to £58,000 (£66,000 if you have a baby under 1 year) and still get something. In some circumstances (e.g. you have more than one child on DLA and have substantial eligible childcare costs) you may get some tax credits even if your income is above these figures. A free 'Tax Credits Guide', which includes a ready reckoner to help assess tax credit entitlement, is available from our helpline.

Both tax credits are claimed on the same form - TC600. This is available from the Tax Credits Helpline on 0845 300 3900 (0845 603 2000 in Northern Ireland). If you have a partner then you must make a joint claim. Please note that claiming tax credits can affect the amount of help you get from certain means-tested benefits.

If neither you or your partner work, or if you work less than 16 hours and have very low earnings you may be able to claim Income Support, income-based Job Seeker's Allowance or certain other benefits. You may also need advice on protecting your national insurance record. Call our helpline for further help.

Sometimes the additional costs involved in looking after a disabled child can contribute to financial problems. The National Debt Helpline offers specialised money advice if you are struggling to manage. Contact a Family can also provide details of charitable trusts that may be willing to offer some financial assistance. Tel: 0808 808 4000. Web: http://www.nationaldebtline.co.uk

As a dad of a disabled child, you may have found it difficult to access support when you felt you needed it most, or it might have come in ways other than those you expected. Sometimes there is a key professional who can open the door to lots of information or contacts, this could be a health visitor, occupational therapist or person working for a voluntary organisation. There are a few support groups now for dads of disabled children in the UK. There are also many local Sure Start schemes, which are initiatives to work with parents of children who are under four years of age. They are keen to involve all parents and some have specific projects for dads. Ask your doctor (GP) or health visitor for more information.

The wider family can be a useful support, although not all parents have found them to be. As one dad said 'I couldn't manage without grandparents. Families can really help if you are lucky enough.' Contact a Family produces a specific factsheet entitled 'Grandparents'- you might find this a useful way of sharing information with your child's grandparents. A copy is available on request.

You might find it hard to talk to friends or neighbours about your child's disability. A couple of dads told us that 'There is a stigma for dads associated with having a disabled child. You hear the whispers of other people behind your back. It's hard talking to your work colleagues, friends and neighbours.' You might find your wife or partner has access to other friends and support that is not available to you. Another dad told us 'I only had 20 minutes with the consultant whereas my wife has other people to talk to.' It is important to find someone to talk to if you can and realise that you are not alone in this feeling; other dads feel this way too. 'I just wanted someone to burden it all on to. But you find that people's eyes just glaze over.. I just wanted someone to listen. I didn't want people to chip in with advice. People shouldn't feel they have to.' You might find a professional counselling service a helpful way of unloading some of your thoughts and feelings. Your GP should be able to tell you about any local services. Some employers also have a confidential counseling scheme for employees.

Support groups around disability might be a good way of meeting other parents who are in a similar situation. One dad told us how useful it had been to make friends with another parent, 'You need support from people who 'get it' - only parents who are in the same situation can really understand.' One dad found a colleague a useful source of support, 'I had a guy at work that had a child with a disability but not the same one as my child. He offered support and said it's not all doom and gloom.'

One father whose child has Down Syndrome said, 'Groups about conditions are very important. The Down Syndrome Association gave us all the basic information we needed. You need one centre where you can get everything from.' One dad was keen that we should say support groups are not just for mums, 'Both mums and dads can join support groups - they can be a real opportunity for dads.' Similarly, support groups don't have to be focused just on sitting and talking. Two dads told us about a football team they have set up for their children. This has a double advantage; the children get access to sport and, whilst they are playing, their parents get to talk to each other.

A fathers' group

One fathers' group has been meeting in Exeter for over ten years. Meetings are every six weeks and there are 10-12 regular members. The group was set up informally and started out meeting in the back room of a local pub. They invite regular guest speakers on specific subjects. The dads do not fundraise or act as an action group, the main aim is for dads to offer emotional and practical support to each other. Their children range in age from 0-36 which means a whole host of experience and advice is available from within the group.

Setting up a dads' group

If you are thinking of starting your own group for fathers or are trying to make an existing group more accessible to dads then Contact a Family have produced a Group Action Pack which contains ideas on how to include fathers in local and national support groups.

If you are interested in setting up a fathers' group then consider holding a family day with lots of activities. Let fathers know that you are thinking about starting a dads' group and ask them what they want. You can ask questions such as:

• Would you like the group to run events or activities specifically for fathers?
• What kinds of things stop you from attending a group?
• What would you like to get out of a support group?

It would be a good idea to have already organized an activity day for dads to attend so that you can let them know all about it on a family day. For more information please see the Group Action Pack.

A lot of the dads we met felt that services did not meet their needs as fathers and some almost went as far as completely excluding them. One dad who was tired of meetings being arranged in the daytime said, 'Services need to be more flexible; they need to arrange home visits outside the hours of 9am to 5pm.' Many dads felt very strongly about the way they were treated. Here are some of the things they said:

• 'When we have a doctor's appointment, she only talks to my wife.'
• 'I would love to go to all the meetings but I just can't.'
• 'They see you as a necessary evil. They seem really wary of dads. There is something really big at stake if dad walks in.'
• 'They seem shocked if we [fathers] ask questions.'
• 'They [professionals] presume you are not involved with your child just because you aren't present at the meeting.'
• 'Because I have to go to work they think it's a rest. They don't see that you are the one living with the child.'
• 'We're seen as being a dad for the day if mum is not there. Professionals are not acknowledging what goes on out-of-hours.'
• 'My wife has had training on lifting and handling but I was not offered it. I lift him too. It seems that training is not for dads but we give personal care too.'
• 'Both parents can't always be there [at meetings] - I might miss vital information because my wife focuses on the negative things that are said.'

There are some key messages here for those that work in or provide services. Future services, meetings and training need to be arranged at a time when both parents might have the opportunity to attend. Fathers may have a different but equally valuable view to offer.

'Have confidence not to worry about what others think.'

'Speak up - keep asking questions.'

'Make use of services like Crossroads Care or babysitters. When you get the opportunity for time out, just take it.'

'If you don't look after yourself you will collapse. Lack of sleep causes rows and stress.'

'Challenge what people say to you. They said my girlfriend didn't need an amniocentesis because she was only 19. But our child was born with Down Syndrome.'

'It's important to look at the child not the condition. The same condition might mean varying disabilities in different children.'

'Hack out a role for yourself'.

'Be prepared to lead.'

'Be positive.'

'You may need to make yourself unpopular.'

'Demand time off.'

'Be strong and resolute for your wife - be a shoulder to cry on.'

'Be proud.'

'Realise the potential of your child.'

'It's hard to tell others about disability and why should we? It's best to let the child explain themselves.'

'Don't brush it [disability] under the carpet.'

'Know your rights with your employer.'

Diamond Blackfan Anaemia

When I first discovered my daughter had a rare disorder [Diamond Blackfan Anaemia] my wife was in utter shock: I, however, felt relieved. For the previous nine months she was very ill, with doctors fobbing us off and me feeling powerless to do anything. Now, I thought, there is a name to it; then there would be a process to follow and some sort of resolution. How wrong I was!

'For the past four years since that day, I have felt utterly useless. Although I have greedily consumed every piece of information there is about DBA, becoming a genetics and haematology expert in the process, I look back and see no progress. Even though I have helped set up a parent support group, registered as a charity and spend hours each week trying to find answers, there is no resolution. Each day my daughter doesn't get any better and each day I chide myself for not doing enough to make it better.

Two years ago, we had another child, a son. The decision to have another baby was difficult. DBA is genetic, but there are no definitive genetic markers, so no genetic counselling is available. Secondly, with no family history of the condition, the chances of having a second child with DBA were unlikely. All my life I have felt jinxed. But this time, it threw me sideways.

'Henry having DBA is, to me, a chance we took, but with his life as the wager. With Alexandra, I feel helpless: with Henry, I feel guilty. My children are an absolute treasure to me. I take nothing for granted. I have no ambition for them, except for them to be happy. That doesn't stop them from being the best in the class, superb artists, or being the best comedians of their time. One day, when this is all over, they'll probably tell me off for taking it all too seriously.'

Dominic Messenger

Diamond Blackfan anaemia is a rare disorder. The anaemia is caused by a failure of the bone marrow to produce red blood cells. Many affected children are very short for their age, and may have delayed puberty. Children with DBA otherwise develop normally, and it is unusual for affected children to have learning difficulties. For more information on DBA: DBA-UK, 71-73 Main Street, Palterton, Chesterfield S44 6UR Tel: 0845 094 15 48 http://www.diamondblackfan.org.uk

Both my boys have special needs

'I am a single father with three children. Two boys, aged seven and nine, and a girl of five. I had to give up my business about three years ago when I split up with my wife, to look after the children. Both boys have special needs; the younger has Asperger syndrome, ADHD (Attention Deficit Hyperactivity Disorder) and a sleeping disorder. The older one has yet to be diagnosed.

'Being a single father, the problems I run into are numerous as people do not associate fathers as being the lone parents. I did go to a carers group for a while but it was all women who, while they tried to be polite, didn't believe that a single man could look after three kids on his own without any help. So I stopped going, as it didn't help me at all.

'The benefit system has been a nightmare, as I didn't know anything about it. I could find no one to help me with it so I have found that getting the correct benefits is still difficult. I find that the local housing department can help fill in forms and I have used them on several occasions lately and they have helped greatly.

'I have no family except a brother whom, for his own reasons, cannot help me very much with the kids. Social services have completely ignored all requests for help and advice, both from me and other professional bodies. Getting the proper education for my kids is also frustrating as I have had to take the LEA to a tribunal to get a special school specified for my son. They ordered a special school but I find that every one in the area is full. So I am still fighting the LEA to get him a suitable school.

'When I take the kids out to places like Alton Towers, it is impossible to go on any rides the oldest one wants to, as there is no one to watch the other kids. So I spend the day trying to get the kids on rides one or two at a time and with a child with ADHD that is not easy.

'I can't have a social life as I can't go out without the kids. The local people took a long time to understand that my boys were not naughty but don't understand that what they do is wrong. But now my neighbours understand and accept them. I struggle to keep the house in order but I do it. I hope this gives you an insight into problems of being a single father of children with special needs.'

H Foster

Attention Deficit Hyperactivity Disorder ADHD is an impairment of either activity or attention control or both. Asperger syndrome is an autistic spectrum disorder and affects the development of social interaction, communication and imagination. Hyperactive Children's Support Group is a support group for children with ADHD and can be contacted at: 71 Whyke Lane, Chichester PO19 7PD Tel: 01243 539 966 Web: http://www.hacsg.org.uk

The National Autistic Society can offer information, advice and support on autistic spectrum disorders. Web: http://www.nas.org.uk Tel: 0845 070 400 4

Ben has Morquio's disease

'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. I was being sensible and logical... and miserable. I didn't feel sorry for myself and nor did I once think, 'Why me?' so therefore I was coping. I flew a banner that stated that '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. He didn't grow quickly but he grew. He carried on walking. He didn't walk very quickly but he walked. He played football, swam, canoed and rode his bike. He 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.

'I plucked up the courage and decided to attend a conference. Yes we had heard of the conference and even seen the photographs but have 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. I did however, want to see how research into the control of the disease might be progressing.

'We met other people with Morquio's disease; we met people with all manner of MPS diseases. We met parents and carers. We met 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's 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's 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's disease, but none more closely than Ben. He amazes me and I love him deeply. I will always look up to him.'

Howard Davies

Children with Morquio disease are missing an enzyme which is essential in cutting up the mucopolysaccharide called keratan sulphate. The incompletely broken down mucopolysaccharides cannot be used in the proper development of bones and cartilage and remain stored in cells in the body causing progressive damage. Morquio disease is one of the mucopolysaccharide diseases also known as MPS lV. Society for Mucopolysaccharide Diseases offers help and support Web: http://www.mpssociety.co.uk Tel: 0845 389 9901

Useful Organisations

BLISS Tel: 0500 618 140 Web: http://www.bliss.org.uk
A new leaflet from BLISS offers fathers advice on how to deal with the stresses and practical difficulties of having a premature or sick baby. Contact them for a free copy.

Both Parents Forever, 39 Cloonmore Avenue, Orpington BR6 9LE Tel: 01689 854343 Helpline
Helps all parents, grandparents and children understand their rights following divorce/separation, care proceedings or child abduction.

Families Need Fathers, 134 Curtain Road, London EC2A 3AR Tel: 0870 7607 496 Helpline (Mon-Fri, 6pm-10pm) Web: http://www.fnf.org.uk
Provides information on shared parenting issues arising from family breakdown and support to divorced and seperated parents, irrespective of gender or marital status.

The Foundation for People with Learning Disabilities, Sea Containers House, 20 Upper Ground, London SE1 9QB Tel: 020 7803 1100 Web: http://www.learningdisabilities.org.uk
This organisation is currently running a research project called 'Recognising Fathers.' Its aim is to understand the issues faced by fathers of children with a learning disability. This project hopes to change policies and increase the awareness of the needs of fathers amongst the organisations that work with fathers.

Gingerbread, 7 Sovereign Close, London E1W 3HW Tel: 0800 018 4318 Helpline (Mon-Fri, 10am-4pm) Web: http://www.gingerbread.org.uk
Provides lone parents with personalised advice and puts people in touch with local support and self-help groups.

National Debtline Tel: 0808 808 4000 Web: http://www.nationaldebtline.co.uk
Free confidential and independent advice. Offers information packs, a personal budget section, sample letters and debt advice.

Parentline Plus, 520 Highgate Studios, 53-79 Highgate Road, London NW5 1TL Tel: 0808 800 2222 Helpline (24 hours) Web: http://www.parentlineplus.org.uk
Focuses on parents and children and offers support for stepfamilies.

Working Families, 1-3 Berry Street, London EC1V 0AA Tel: 0800 013 0313 Legal Helpline Tel: 020 7253 7243 Helpline Web: http://www.workingfamilies.org.uk
Offers information and advice to working parents. It has a "Waving not Drowning" project for parents of disabled children and 'Make it work for you' a guide for parents trying to combine paid work and caring for a disabled child.

Citizen's Advice Bureau Web: http://www.adviceguide.org.uk
A UK-wide network of independent advice centres.

Dad's Haven Web: http://www.dads-haven.co.uk

Department for Work and Pensions Web: http://www.dwp.gov.uk
Information on employment and benefits.

Direct Gov Web: http://www.direct.gov.uk
A government website that brings together a lot of official information and advice.

Fathers Direct Web: http://www.fathersdirect.com

Home Dad UK Web: http://www.homedad.org.uk

Disability, Pregnancy & Parenthood International Web: http://www.dppi.org.uk

Disabled Parents Network Web: http://www.disabledparentsnetwork.org.uk

Uncommon Fathers : Reflections on Raising a Child with a Disability Donald J Meyer (Editor), 1995. £18.99.

Just a Shadow - a review of support for fathers of children with disabilities by Sheila West. 2000. Price £9.00. Available from The Handsel Trust, 43 Newman Road, Birmingham B24 9AG Tel: 0121 373 2747

Make sure you are receiving all the benefits and financial help you are entitled to. See section on 'Benefits, tax credits and other money matters.'

Check out the information listed in the "Dealing with Employers" section, you may be able to take extra unpaid leave from work.

Find out if there is a local or national support group - you might find that they have valuable information and advice on offer.

Make use of all your support networks and remember that it is ok to ask for help.

Ring the Contact a Family Helpline if you have any questions, information needs or just want to talk. The helpline number is 0808 808 3555 Monday to Friday 10am to 4pm and Monday 5.30pm - 7.30pm.

References

1 The Experiences of Fathers of Children with Disabilities, Ruth Soult, Advocacy West Lancs,1998.

2 Just a Shadow: A review of support for the fathers of children with disabilities, Sheila West, The Handsel Trust, 2000.

3 Fathers in Context, edited by Barry Carpenter, David Fulton Publishers, 1997.