Dads' zone: Contact a Family - for families with disabled children: information on rare syndromes and disorders

We hope that this section of the website 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. If you have any useful tips or information you'd like to share with other dads, we'd like to hear from you - please e-mail: dads@cafamily.org.uk

We have a specialist worker to forge links with fathers. We also produce a factsheet on "Fathers" a version of which, recorded in June 2004, is available as an audio file in MP3 format or podcast (13.1Mb). In addition, Dads' Zone can help with:

We have recently been contacted by a separated father, Paul from London, who would very much like to hear from other separated fathers with disabled children to discuss issues that they may have in common, especially those with joint custody. Paul is experiencing practical problems around things like adaptations to his home and arranging for school transport to drop his daughter at his house on occasions rather than at his ex wife's home. If you would like to share your experiences with Paul please e-mail: jill.harrison@cafamily.org.uk and we will send it on to Paul.

Different Dads: Fathers' Stories of Parenting Disabled Children

Edited by Jill Harrison, Matthew Henderson and Rob Leonard

Foreword by Rt. Hon. David Cameron MP

Cover of the book

'It is a great idea to draw together stories of fathers' experiences in bringing up disabled children. One of the ways parents manage to cope is to know that others have been through the same experiences. Then you learn that it isn't just about coping - there are positive stories to tell.' - David Cameron MP

Fathers of disabled children can feel overlooked when the focus of much parenting support is aimed at mothers. Different Dads is a collection of inspiring personal testimonies written by 21 fathers of disabled children who reflect on their own experiences and offer advice to other fathers and families on the challenges of raising a child with a disability.

The fathers featured represent a broad spectrum of experience and disabilities. They have children affected by rare and not so rare conditions including Arthrogryposis, Oesophageal Atresia, Cytomegalovirus, Olliers Disease, Peters Anomaly, a rare chromosome disorder, CHARGE Syndrome and Cornelia de Lange Syndrome as well as a father who has yet to be given a diagnosis. Their children range in ages from 2-40.

What they all have in common are the challenges that face them and their families in raising a child with a disability. Issues explored include the reactions of family, friends and colleagues, how to deal with the organisations and professionals that support families with a disabled child and the difficulty of being open about feelings in a culture that doesn't always expect men to have a sensitive or nurturing role.

Offering direct and thoughtful perspectives on being a father of a child with a disability, this book will be a valuable source of support and information for families with disabled children, and also for health and social care professionals who work with these families.

The book can be ordered from Jessica Kingsley Publishers.

Paperback, ISBN-10: 1-84310-454-7 ISBN-13: 9781843104544, 176pp, £12.99, $19.95

All royalties from sales of this book are donated to Contact a Family.

Being a dad A father and child at an art workshop organised by Contact a Family West Midlands

"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."

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

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.

A dad's role is a mixed one. Many dad's stress the fact that they need to be the breadwinner particularly because of the extra costs of caring for a disabled child, but that this can mean being absent from meetings or from carrying out much of the day-to-day care of their child. Service providers often presume, wrongly, that fathers who are not seen at meetings are not doing anything! You might see your role 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.

Like all parents, when you find out your child has a disability the first thing you look for is information. Many fathers feel this is the most important issue - but have learnt that it is vital not to forget the child in their search for information.

"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."

"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.

"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."

"I only had 20 minutes with the consultant whereas my wife has other people to talk to."

It is important to be listened to - to have a sounding block. Try to make use of all your support networks - it might be your wife or partner, friend or neighbour. It might be helpful to try and just get some time to yourself or to spend some time alone with your partner. Remember that it's OK to ask for help.

You might find it hard to talk to friends or neighbours about your child's disability and you may feel your wife or partner has access to other friends and support that is not available to you. But 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.

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 GP or Health Visitor for more information.

The wider family can be a useful source of support too, 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 for grandparents - you might find this a useful way of sharing information with your child's grandparents.

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.

"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."

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.

Some dads become the sole carer for their disabled child. This is from a dad whose wife had died the year before: "From a dads point of view what a big role mum plays - 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.

One Parent Families is a national organisation which supports lone parents. They have a Lone Parent Helpline, call free on 0800 018 5026, Monday to Friday, 9am to 5pm. This provides free information to lone parents on a variety of issues including Maintenance, Tax Credits, Benefits, Work, Education, Legal rights, Childcare, Holidays. It also aims to put lone parents in touch with other organisations and groups who are best placed to help them as well as identifying groups in their local area. Visit Web: http://www.oneparentfamilies.org.uk

"My new partner and I thought it would be useful for you to include a section on Step Dads in your Father' 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 our list of useful organisations.

Looking after your health is important but something which is often neglected when so much can be going on around you. Also, the pressures of caring for any child as well as the extra difficulties you and your partner may have to deal with as a result of your child's disability, can have a direct impact on your health. Like many mums, many dads say they felt quite isolated for a long time after the birth of a child with a disability. With more demands on your time, you may experience stress. Perhaps you have given up leisure activities you previously enjoyed with friends. A balanced diet and regular exercise can help improve both your physical and mental wellbeing, without a doubt leaving you better equipped to take on whatever struggles parenting throws at you.

Relationships

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.

'Going out at night occasionally without the children [helped our relationship]'

'Keeping talking to each other and not bottling up our feelings - being truthful about what we really think about our situation'

'Having someone independent to talk to, unload on - discuss feelings of guilt etc, without being judged and not having to put a brave face on the whole time'

'In the end, a local charity provided us with counselling and I'm sure that is the main reason we are still together as a family'

Not all parents remain together and added strains may be caused if you are not living with your partner or your child. It is important to try and keep the lines of communication open so that you are involved as much as you are able. Having enough information to keep you up-to-date throughout the various stages of your child's life is important. Contact a Family is always happy to try and help. There are also a number of organisations working with lone parents, one or two of which are listed in our Resources section.

This next section looks specifically at some of the legal and practical issues that dad's may face when the relationship has broken down completely and dad is now living apart from the 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 (this includes most married parents, unmarried mothers, and some unmarried fathers, e.g. an unmarried father who has made a parental responsibility agreement with the mother) cannot be denied contact with their child but 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.

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). A directory of mediators is available from The United Kingdom College of Family Mediators, Alexander House, Telephone Avenue, Bristol BS1 4BS, Tel: 0117 904 7223, Web: http://www.ukcfm.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, 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 citizens advice bureau 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. 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.

Both a child's parents are legally responsible for her/his 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), which can calculate how much is due and set up payment arrangements through the CSA. From March 2003 new cases are considered using a new calculation, and eventually all existing cases will be reassessed.

A parent with day to day care of a child will 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 CSA to make an assessment, including a non-resident parent (NRP) and, in Scotland, although in limited circumstances, a child can also apply. The CSA can only consider applications for child support in respect of children under 16 yrs, or under 19 yrs 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 9am - 5pm. In England, Wales and Scotland, the number is: 0845 713 3133. In N. Ireland the number is: 0845 713 9700.

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). 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.

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. The key point is to 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, where they have the opportunity to meet other children in similar circumstances. Telephone the Contact a Family helpline for details of any in your area or local contacts who may be able to identify groups and opportunities for siblings. Also, you may find our factsheet "Siblings" helpful.

Your Rights

As the father of a disabled child you may be the main breadwinner in your family. Given this it will be important for you to find out about financial help that may be available. 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.

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 health problems. It is paid at one of three rates depending on your child's needs. It can be paid from 3 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 5 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 3 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. It is usually best to get help with the form from a local Citizen's Advice Bureau or disability advice project since it is long and complex.

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

If you work you must earn no more than £82 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 assist you 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 a claim for CA even if your child has not received a decision on their DLA application. This should help protect your right to any backdating.

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.

The 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 nor 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 Seekers 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 (0808 808 4000) 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.

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.

'Without being able to utilise these flexible working arrangements my single parents household would not function - i.e. I could not maintain my mortgage etc.' (office worker)

'Allow me to see more of my child - employer agreed to transfer me to a base nearer to home' ( fire fighter)

'Able to assist in routine appointments and have more say in school work' (designer)

'I now have my office based at home and this has enabled me to continue to work full time, other wise I would have had to work part time' (IT)

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.

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 £106 or 90% of earnings, whichever is less, as Statutory Paternity Pay.

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 £106 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.

This is a right to take time off 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.

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 eighteenth birthday.

Family Life

If you need to adapt your home to make it easier for you or your child to manage then you may be entitled to a Disabled Facilities Grant (or Home Improvement Grant if you live in Scotland). For anyone considering an application for a grant it is advisable to seek further help and advice as the system can prove quite complex. Fore information about help to adapt your home see our factsheet 'Aids Equipment and Adaptations'.

Home improvement agencies, sometimes called 'care and repair agencies', exist to help home owners or private tenants improve their living conditions. This involves giving technical and financial advice as well as help and guidance through the application process for grants. They may also be able to identify other sources of financial help if the grant isn't enough.

For information about local agencies in England contact Foundations on 01457 891 909. For Scotland contact Care and Repair Scotland on 0141 221 9879. For Wales contact Care and Repair Cymru on 029 2057 6286.

If you live in Northern Ireland a local disability advice project should be able to help further. Families in Northern Ireland can also visit the website of the Northern Ireland Housing Executive where a number of helpful publications can be downloaded, Web: http://www.nihe.gov.uk/publications This includes the booklet 'Adapting your own home, A Step by Step Guide for People with Disabilities'. You can also contact our Northern Ireland office.

For families in Scotland, more detailed information can be found within the guide 'Housing Grants - An applicant's guide to improvement and repair grants for private housing' available from the Scottish Executive, Housing Division 2, Victoria Quay, Edinburgh EH6 6QQ. This can also be downloaded in Adobe Acrobat pdf format from Web: http://www.scotland.gov.uk/library5/housing/hogr.pdf (0.1Mb). You can also contact our Scotland office.

If your child receives the high rate of the Disability Living Allowance mobility component and will receive it for at least 3 years then you can join the Motability Scheme. The scheme can help disabled people hire or buy a car or a powered wheelchair or a buggy. The Motability Wheelchair Scheme is now called 'route2mobility'. For further information contact: Motability, Goodman House, Station Approach, Harlow CM20 2ET Tel: 01279 635 666 Web: http://www.motability.co.uk

For advice on specially adapted vehicles, special aids for cars and alternative sources of finance contact:

Claimants of the highest rate of the DLA mobility component will also be exempt from Vehicle Excise Duty and also qualify for the Blue Badge which entitles the holder to park in certain areas. Further information can be found in Contact Family's factsheet 'Benefits, Tax Credits and other financial help'.

Making Contact with other Dads

"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."

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

These are some tips for dads by dads. You may find contact with others who have gone through similar experiences as you a valuable source of support. There are a number of ways you can make contact with other dads.

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 who had 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.

One father's 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.

Although groups specifically set up for dads are more and more popular they are still few and far between. If there isn't a dads group in your area but you are interested in helping to get one up and running you may find our help for parents' groups section helpful. This has lots of information aimed at groups including a number of Group Action Pack guides specifically on setting up a group.

In June 2004 we launched makingcontact.org, our new internet linking service. For many years Contact a Family has helped families make contact with each other to share experiences, information and offer mutual support. This has always been a hugely important part of our work and has led to us working closely with parents to set up thousands of groups and networks across the UK. Also, for families caring for children with very rare conditions, where it has not been possible to get a group up and running simply because of the small number of families affected, the Contact a Family Helpline has facilitated one-to-one links between individual families. Makingcontact.org is a major development of this aspect of our work - an internet service allowing family members to make direct contact with other family members in similar circumstances in a very similar way to many of the commercial websites which put old school and work colleagues back in touch. Visit our contact with other parents section for more information on our linking services.

Working with dads

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:

'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 [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.

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 (Ref 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, child care, 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.

In Sheila West's, 'Just a Shadow' (Ref 2), the researcher made 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 (Ref 3) reports on further research to look at how schools were involving fathers of children with Special Educational Needs. 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.'

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.

You might also find some of Contact a Family's research, detailed on our reports page, helpful. Over the years we have collected a lot of information from families about their support needs, most recently on issues such as Relationships, and Employment.

Dads' stories

"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."

"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 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 border but I do it. I hope this gives you an insight into problems of being a single father of children with special needs."

"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 now 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 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."

Resources

Both Parents Forever, 39 Cloonmore Avenue, Orpington BR6 9LE Tel: 01689 854343 (8am-9pm) 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 111 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.

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.

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 (Wed-Fri, 9.30am-1pm and 2pm-4.30pm) Web: http://www.workingfamilies.org.uk Offers information and advice to working parents. Has a "Waving not Drowning" project for parents of children with disabilities.

Disability, Pregnancy & Parenthood International. A small UK based charity which promotes better awareness and support for disabled people considering, during and after pregnancy and as parents. Web: http://www.dppi.org.uk

The Foundation for People with Learning Disabilities. Have a "Recognising Fathers" project to develop a better understanding of the issues faced by fathers of children with a learning disability. Web: http://www.learningdisabilities.org.uk/page.cfm?pagecode=OWPIRF. They are also conducting a survey into father's with a child with a learning disability. If you would like to take part please visit their website at Web: http://www.learningdisabilities.org.uk

Citizens Advice Bureau. A UK network of independent advice centres. The website includes information on finance, health, housing, employment immigration etc. Web: http://www.adviceguide.org.uk

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

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

Parentline Plus. A UK charity that supports anyone parenting a child. Listening, support, information and guidance on all issues of concern. Web: http://www.parentlineplus.org.uk

Recognising Fathers - booklet
The Recognising Fathers booklet highlights key findings from the research and makes recommendations to help employers, practitioners and service commissioners understand the issues faced by fathers and engage better with them. Web: http://www.learningdisabilities.org.uk/publications/?&EntryId=15166