The needs of fathers of children with disabilities

27 July 2007

The following is an extract of an article by Barry Carpenter, chief executive of Sunfield School. The full article appeared in volume 8 issue 1 (2007) of Kairaranga, a peer reviewed journal of educational practice, based in New Zealand.

Research around the needs of fathers of children with disabilities has been infrequent (Gavidia-Payne and Stoneman, 2004). In families of children with disabilities, mothers and fathers can react differently to the news that their child has a disability or special need (Fidalgo and Pimentel, 2004). Different family members may look to the father for support at a time when he is adapting to a new and sometimes difficult set of circumstances. The needs of the father, among them for him to be nurtured himself, often go unrecognised by professionals (Social Care Institute for Excellence (SCIE), 2005). Fathers have been identified by researchers in this field as ‘hard to reach’ (McConkey, 1994), ‘the invisible parent’ (Ballard, 1994), the ‘peripheral parent’ (Herbert and Carpenter, 1994).

Sheila West (2000), based on her research, described them as ‘just a shadow’, where, generally, fathers felt that the support systems that were in place were beneficial to their partners, but not to them. Improved support, information and the opportunity to access services, fathers felt would enable them to be much more involved with their child. Carpenter and Herbert (1997) observed that fathers found it difficult to assert their involvement. Neither health and education professionals nor employers recognised the need of the father for inclusion in the family situation. Fathers were forced by professional structures and social expectations to fall back on the 19th century stereotyped role of ‘protector’, of ‘being competent in a crisis’, yet emotionally uninvolved.

Emotional reactions by fathers to the birth of their child with a disability vary (Rendall, 1997). Meyer (1995) tells how the birth brings about life-transforming experiences. For some, it is a challenge that allows them to display aspects of their personality not previously acknowledged. For others, it causes stress, disorientates their life goals and affects their work patterns. Many fathers in the New Zealand study, ‘Perilous Passage’, spoke of their almost immediate worry about their child’s long-term future (Bray et al., 1995). This study also reported that fathers consumed more alcohol and more frequently as a way of dealing with their emotional trauma. Throughout all of these studies, the provider/breadwinner role of the father is central, a finding confirmed by Contact-a-Family in their recent study (CAF, 2005). Conversely, a recent report from the National Deaf Children’s Society (NDCS) stated that fathers of deaf children actually believe they are overlooked by service providers (NDCS, 2006).

What can schools do to support dads?

Whatever the school setting, there will be a father of a child with special needs/disabilities who has experienced some of the emotions and reactions described earlier in this article. It would be unrealistic to expect every school to have resources available to support dads directly, but they can act as a conduit. Schools, probably through the Special Needs Co-ordinator (SENCO), can have some key website contact available (www.fatherhoodinstitute.org; www.cafamily.org.uk; www.ndcs.org.uk).

More fundamentally, all schools can ask ‘Are we father-friendly?’, ‘Do dads feel welcome in our schools?’, ‘Do we engage fathers as supporters of their children’s learning?’ Some fathers will have come through early years programmes where they have been actively involved in the care and education of their child. Indeed, Family Services should ‘have specific strategies and activities which increase the involvement of fathers in the services’ (DfES, 2003).

Hughes and Fisher (2006) describe the ‘Daddy Cool’ programme at a Sure Start Children’s Centre in Southampton, which has developed Saturday morning breakfast clubs for male carers and their children. It has a special magazine for fathers, and runs a weekly five-a-side football game for them as well as other activities. The result is a large increase in the number of dads at the Centre, learning about childcare, first aid, debt management and a host of other issues vital to the lives of their children. What is the potential transference of such ideas to the concept and practice of other family-focused services in other settings?

There are a range of paper-based resources that schools could have available – the Dad Pack (Fathers Direct, 2006) or the Fathers Factsheet (CAF, 2005). Advice to staff is also downloadable from SCIE, who have produced a summarised literature review. Outcomes from the ‘Recognising Fathers’ research project are also available via the internet (www.fpld.org.uk). Books written by fathers of disabled children are increasingly available (for example, Ollie by Stephen Venables (2006)). The National Deaf Children’s Society has recently published a blog written by a father of a deaf child on its website (www.ndcs.org.uk).  

For some fathers, support groups around disability might be a good way of meeting other fathers who are in a similar situation. In the CAF (2005) study, one dad reported how useful it had been to make friends with another father, ‘You need support from people who “get it” – only dads who are in the same situation can really understand’ (p. 8). While a school may not run its own support group, it would be possible to network fathers to groups that may exist in the area. Not all groups need to meet physically; some are virtual. Sunfield School in Worcestershire, UK, runs an email group for its fathers – SunDads.

The same school has also developed a model of training, ‘Celebrating Families’, which specifically addresses the needs of particular family members and brings them together annually for their own training events (e.g. ‘Mum’s the Word’, ‘Siblings’ Workshops’) alongside a general family training programme (Carpenter, Addenbrooke, Attfield and Conway, 2004). Specific ‘Dad Days’ have focused on such topics as housing, sex education, challenging behaviour and fatherhood. Men process information differently: research on fathers of children with disabilities has indicated that they tend to focus on the ‘big picture’ (Gray, 1992). Their concerns are often for the future – employment, housing, work, money. Training needs to be tailored to these topics and to male brain modes of learning and acquiring information (Baron-Cohen, 2003).

Many fathers have specific skills from their professional lives which mean that within a model of reciprocal partnership that relies on skill-sharing as an approach to problem solving and development (Carpenter, Attfield and Logan, 2006), they can assist many aspects of school policy development.

Thinking ‘Dad’?

Do our schools think ‘Dad’? There has been a worrying trend towards parents evenings being held between 4.00 p.m. and 6.00 p.m. when many fathers (and mothers too) may not have returned from their own day jobs. If only the mother is able to attend such parent–teacher interviews, then she again becomes the holder of complex, detailed information, which it is assumed she will transmit to the father. Where parents have different foci of interest in their child’s education, this could cause conflict. Why are we putting such unnecessary pressure on relationships when some optional, later evening times would have enabled both parents to attend the consultation?

Among parents of pupils with special needs, many fathers would welcome the opportunity to attend their child’s Review meetings in school, but research reported by Carpenter (2002) discovered that many were given little, or no, notice of the review meeting date, and the school’s expectation was often that the mother only would attend. Fathers in this study recommended that schools should always give them the option to attend. To achieve this, they felt several months’ notice in advance would help them either to plan time out, take paid or unpaid leave or, as one father who worked in a manual post suggested, arrange to skip a lunch break. Most of all, these fathers wanted their right to attend acknowledged and for the decision to rest with them.

Many schools are locked into operating only within defined hours, Monday to Friday. This may coincide exactly with a father’s working hours and give him little or no opportunity to visit the school or participate in school-related activities. Can we not generate more flexibility in how school staff discharge their working hours? One school organised a termly Saturday morning computer club where dads supported their child with special needs; the school benefited directly in that several of the fathers were able to offer particular expertise regarding IT. Another school organised a summer holiday working party, where fathers volunteered to carry out painting of classrooms. The Head reported that during these three days the fathers not only achieved a lot for the school, but bonded as a group, exploring their attitudes, feelings and thoughts around rearing a child with disabilities.

Conclusion

The ‘Recognising Fathers’ project has echoed some of the key messages found in the earlier research studies cited. From the interviews conducted during this project, it was apparent that many fathers of children with special educational needs are playing an active role in family life – through providing care to their children, supporting their partner and campaigning for resources. They are often balancing this with paid employment. The Interviews in this study identified several aspects of good practice (e.g. flexible working patterns), but concluded with a series of major recommendations for policy makers, service providers and professionals.

What is new is that the ‘Recognising Fathers’ study has articulated these messages in the context of 21st century fatherhood. The range of initiatives around fatherhood generally (e.g. paternity leave) may at long last mean that the messages will be heard and acted upon. Government policy and service provision need to be challenged, and, finally, fathers can be liberated from the ‘myth of manhood’ that has trapped them within a previously unquestioned set of expectations, both in their role as providers and as family members.

Fatherhood needs to be offered status and equality, and the fathers of disabled children warrant respect and support. For the sake of these children, we need to be ‘Recognising Fathers’. 

References

Ballard, K. (1994) Disability, Family, Whãnau and Society. Palmeston North, New Zealand: Dunmore Press.

Baron-Cohen, S. (2003) ‘They just can’t help it!: Differences between the male and female brain,’ Guardian, April 17th.

Bray, A., Skelton, E.J., Ballard, K. and Clarkson, J. (1995) ‘Fathers of children with disabilities: some experiences and reflections’, New Zealand Journal of Disability Studies, 1 (1), 164–176.

Carpenter, B. (2000) ‘Sustaining the family: meeting the needs of families of children with disabilities’, British Journal of Special Education, 27 (3), 135–144.

Carpenter, B. (2002) ‘Inside the portrait of a family: the importance of fatherhood’, Early Child Development and Care, 172 (2), 195–202.

Carpenter, B. and Herbert, E. (1997) ‘Fathers: are we meeting their needs?’. In: Carpenter, B. (ed.) (1997) Families in Context: Emerging trends in family support and early intervention. London: David Fulton.

Carpenter, B., Attfield, E. and Logan, N. (2006) ‘Communicating with families’, The SLD Experience, Summer, 21–25.

Carpenter, B., Addenbrook, M., Attfield, E. and Conway, S. (2004) ‘Celebrating families: an inclusive model of family-centered training’, British Journal of Special Education, 31 (2), 75–80.

Cohen, D. (2001) The Father’s Book: Being a good dad in the 21st century. West Sussex: John Wiley.

Contact-a-Family (2005) ‘Fathers Factsheet’. London: Contact a Family.

Department for Education and Science (2003) Children’s Centre Core Offer. London: Stationary Office.

Fathers Direct (2006) The Dad Pack.

Fidalgo, Z. and Pimentel, J.S. (2004) ‘Mother–child and father–child interactions with Down Syndrome (DS) children: a comparative study’, Journal of Intellectual Disability Research, 48 (4–5), 326.

Gavidia-Payne, S. and Stoneman, Z. (2004) ‘Family predictors of maternal and paternal involvement in programmes for young children with disabilities.’ In: M.A. Feldman (ed.) Early Intervention: The essential readings. Oxford: Blackwell.

Gray, J. (1992) Men Are from Mars: Women are from Venus. London: Harper Collins.

Herbert, E. and Carpenter, B. (1994) ‘Fathers – the secondary partners: professional perceptions and a father’s recollections’, Children and Society, 8 (1), 31–41.

Hughes, B. and Fisher, D. (2006) ‘Children’s centres’, FatherWork, 4 (2), 4–7.

Lamb, M.E. (2004) The Role of the Father in Child Development. Hoboken, NJ: John Wiley and Sons.

McConkey, R. (1994) ‘Early intervention: planning futures, shaping years’, Mental Handicap Research, 7 (1), 4–15.

Meyer, D. (1995) Uncommon Fathers: Reflections on raising a child with a disability. Bethesda, MD: Woodbine House.

Moore, T. (2005) ‘What do we need to know to work effectively with young children and families?: towards a core curriculum’. Paper to the 9th Australian Institute of Family Studies Conference, Melbourne, Australia (February).

National Deaf Children’s Society (2006) ‘Has anyone thought to include me?: fathers’ perceptions of having a deaf child and the services that support them’. [Online at: www.ndcs.org.uk]

Office of National Statistics (2005) Social Trends 35. London: The Stationery Office.

Parsons, T. (2003) ‘Man and boy: reflections on the influence of a dad’, Dad: The magazine for new fathers, 1 (Spring), 22–25.

Rendall, D. (1997) ‘Fatherhood and learning disabilities: a personal account of reaction and resolution’, Journal of Learning Disabilities for Nursing, Health and Social Care, 1 (2), 77–83.

Roll, J. (1991) What Is a Family? London: Family Policy Studies Centre.

Social Care Institute for Excellence (2005) ‘Being a father to a child with disabilities: issues and what helps’ (SCARE Briefing Report 16). [Online at: www.scie.org.uk]

Tolston, A. (1977) The Units of Masculinity. London: Tavistock Publications.

Venables, S. (2006) Ollie: The true story of a brief and courageous life. London: Hutchinson.

West, S. (2000) Just a Shadow: A review of support for the fathers of children with disabilities. Birmingham: The Handsel Trust.

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