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I grew up with a sibling with a disability called Williams Syndrome (WS). I loved him the same as any of my other brothers, although I felt more protective over him. It would be interesting to investigate sibling experiences and compare them with my own. But I am keen to explore different experiences of families living with a child with special educational needs and/or disabilities, particularly from a parents’ perspective. Literature has highlighted the challenges parents face when raising a child with a disability, as well as the benefits and unique experiences (Lewis et al, 2007). Furthermore, recent policy reflects the need to recognise parents in their kno-wledge and understanding of disabilities. The Code of Practice in the United Kingdom emphasises the involvement of parents and families of children with disabilities (DfE, 2015).
Three parents of young children with Williams Syndrome from the UK very kindly agreed to answer some of my questions. As I currently live abroad, it was more convenient to do this through emailing a form with several questions. Pseudonyms have been used to protect participants’ identities.
Every time I received another completed form, I became more and more aware of how having a child with WS has impacted peoples’ lives. Some of the answers I felt emotionally moved, and others inspired me to reflect on my own views of disability and inclusion.
Perhaps unsurprisingly, none of the parents had heard of Williams Syndrome before their child was diagnosed. With a prevalence of between 1 in 7,500 and 1 in 20,000 live births, it is a rare intellectual disability (Scallan, Senior and Reilly, 2011).
Perhaps unsurprisingly, none of the parents had heard of Williams Syndrome before their child was diagnosed.
As society moves further towards the social model, focussing on the inclusion of children with disabilities, it seems necessary to define the two most dominant models used in literature. People who hold a medical model perspective may use more medical discourse such as ‘impairment’ ‘suffer’ or ‘cure’. They are often professionals, and focus on within-child factors. For example, Williams Syndrome is caused by a deletion in genes, and cannot be cured (Donnai and Karmiloff-Smith, 2000). On the other hand, the social model perceives disability as barriers in society that need to be adapted and adjusted to include those with disabilities. For example, a disco can be too loud to be enjoyed by children with Williams Syndrome because of their hyperacusis, but if the music is played quieter then they can really enjoy the party. Research suggests most parents hold a social perspective, as they value a community that is welcoming and accepting to their children (Runswick-Cole, 2008).
Out of three parents interviewed, one described himself as being open minded to disability before his child had WS. Matt, who has a 2 year old with WS, highlighted the increase of inclusive opportunities now compared to when he was a child. Joyce, parent of a 5 year old with WS, had some previous experience, but suggested it could be uncomfortable and scary for people who do not know how to behave around people with disabilities. I can recall my childhood friends not knowing how to act around my brother until I interacted with him. They usually had not met anyone like him, and their wide eyes would reflect a mixture of fear and intrigue.
A key theme among parents interviewed was the individual differences between children with Williams Syndrome, with Joyce emphasising “one size will definitely not fit all”. Although children with Williams Syndrome can display similar behaviours, characteristics and health conditions, there are so many differences between them that makes each individual unique.
For example, I interviewed a young person with Williams Syndrome, Kelly, 22, who independently completed the questions with long, detailed and interesting answers. She also highlighted the wide differences in having Williams Syndrome compared to reading about it. Kelly explains “There are so many articles that highlight what it means you will not be able to do rather than what you can do”.
On the other hand, a parent asked her son Steve, 36. He showed no real understanding or awareness of having WS, what it meant and how it affected him. This highlights the wide differences in learning difficulties that can occur (Mervis and Klein-Tasman, 2000). Kelly attended mainstream school, further education and has enjoyed volunteering. She is currently living at home and looking for a part time job, whereas Steve lives in a residential care home and needs significantly more support.
Nick remembers the initial stages of his son’s diagnosis; it “led to a lot of research about Williams Syndrome which was a very hard time as the majority of research focuses on the negative side. This brought its own concerns and lots of worrying”.
Matt describes “the metaphorical book on Williams Syndrome doesn’t really mean much”. After reading around the disability and seeing videos he valued “most importantly speaking to parents and WS individuals”.
It is interesting that this was highlighted, as in my own research I found numerous articles that focus on the genetic profile of Williams Syndrome (e.g. Donnai and Karmiloff-Smith, 2000) and little qualitative research on the experiences and lives of individuals with WS and their families. Although this research has led to the knowledge of the microdeletion in 1993, I believe there is an absence of social research on experiences and perceptions (Martin, www.williams-syndrome.org.uk/wsf-people/i-am-health-professional). This may be due to the majority of professionals holding a medical model perspective, because their reasons for research require this, rather than professionals working from a social/care service viewpoint.
All three parents emphasised the joy and pride they feel when their child reaches a milestone, which reflects the research by Scallan et al (2011). Children with Williams Syndrome have developmental delay, which means they take longer than their peers to achieve milestones, particularly in the early years (Martens et al, 2008). Nick says “counting, learning a song, drawing a picture or talking; it may take them longer but it is very rewarding” whilst Joyce describes how her son helped her to “realise how complex the human body is” and “we can celebrate even the smallest of milestones in his life”. Matt shares, “the pride we both get from hearing about his achievements at school and his accomplishments in general life is just amazing”.
It is clear how much pleasure children with WS bring to their parents. As Nick describes how very loving and affectionate his son can be, he reflects “from their amazing smile they have to their infectious laugh (they do use this to get out of trouble if they can)”.
Matt and Joyce highlight the way their children have changed their perceptions. “He has helped us to see pleasure in very simple things” Joyce says, “he has opened my eyes to what is important to me and made me re-prioritise aspects of my life”. Whilst Matt expresses how much he has learnt from his son, who “lives in the moment, and the pace he lives his life is fantastic”. He adds “the perspective on the world he has given us all is invaluable”.
Despite the happiness their children bring, having a child with Williams Syndrome can be very challenging. It seems that it can often be difficult to explain this to other people. Joyce highlights the restrictions her family faces as her son “cannot cope with the noise and busy-ness of the environment” that her other son would enjoy such as a public swimming pool or a bowling alley. Children with WS may need different activities to their typically developing peers or siblings, which makes family life difficult to manage. Joyce explains that “a lot of reassurance and preparatory work for any new event in his life” is needed to try and overcome the high anxiety that her son experiences. “Sometimes, even with preparation, our son cannot cope with certain experiences e.g. a hair-cut, a visit to the doctor”.
Both Joyce and Nick highlighted their concerns over eating difficulties; “He will only eat certain foods which impacts upon family meals and eating out. It also concerns me that he is not eating a balanced diet!” “with lots of meals going untouched”. As well as feeding problems, it is well known that young children with WS will have difficulty sleeping. Nick explains “sleeping was difficult and there was a lot of sleepless nights. Again lots of different techniques tried before we found him being swaddled in a Muslim square with dummy held in and being rocked to sleep – don’t stop early though or you were back to square one”.
All three parents commented on the large amount time spend in hospitals. Matt describes his son at 18 months old having open heart surgery, “you actually can’t imagine what that’s like when it’s your child”. Nick summarises “it felt like we lived in the hospital… Over time the hospital visits have become less but the worries continue”.
It was clear that parents felt they had learned a great deal from their children with WS. Nick mentioned learning to have significantly more patience, whilst Joyce responded “I have learned that, despite the many challenges that having a child with Williams Syndrome can bring, the love and joy that they bring to your life is the overwhelming emotion”. She further added “My experience has completely changed my outlook. I embrace the difference in everybody now and see the whole person rather than their disability”.
Matt also shared about how much his perception of disability had changed, “I would never have thought having a child with disability would have so many good points”. He continues “I now believe that a child with a disability is just as miraculous and stunning as a child that does not”.
Joyce also volunteers at a group for children with disabilities, where she expressed her joy at celebrating achievements with parents as their children develop new skills over time, “I am very sensitive to the needs of people with disabilities and campaign hard to reduce the injustices that exist for people who have a disability”.
Hearing the stories and experiences from three different parents highlights the comparisons and differences in raising a child with Williams Syndrome. All three parents highlighted similar aspects, such as the wide variation between reading about WS and living with a child with WS. Furthermore, similar challenges affected two of the families, such as feeding problems or high anxiety. However, the overwhelming theme among parents was the joy they experienced in having a child with WS. This ranged from their pride in their child’s achievements, to enjoying their happy and loving personalities. Parents also highlighted that this was similar for their other children, but in a slightly different way. For example, Matt highlights “both of our children bring our family as much joy, happiness and make us feel incredibly proud… just in different ways”. I feel that ‘different’ is a key word. It suggests children with WS and children with other special educational needs or disabilities are differently abled, but not any less able or less equal than anyone else. This is a key argument for the inclusion of children with disabilities in society (Florian, 2010). They have different ways of achieving their goals, but they surely do not fail to bring a joy to their parents, as it is evident in these interviews.
Donnai, D. and Karmiloff-Smith, (2000). Williams Syndrome: From genotype through to the cognitive phenotype. American Journal of Medical Genetics 97 (2) pp.164-171
Florian, L. (2010) Special Education in an era of inclusion: The end of special education or a new beginning? The Psychology of Education Review 34 (2) pp.22-29
Lewis, A., Davidson, I., Ellins, J., Niblett, L., Parsons, S., Robertson, C., and Sharpe, J. (2007). The experiences of disabled pupils and their families British Journal of Special Education. 34 (4)189-195
Martens, M., Wilson, S. and Reutens, D. (2008). Research Review: Williams Syndrome: a critical review of the cognitive, behavioural, and neuroanatomical phenotype. Journal of Child Psychology and Psychiatry 49 (6) pp.576-608
Martin, N. (unknown). ‘I am a Professional’ Available from www.williams-syndrome.org.uk/wsf-people/i-am-health-professional Accessed 19th May 2016.
Mervis C. B. & Klein-Tasman B. P. (2000). Williams syndrome: cognition, personality, and adaptive behaviour, Mental Retardation and Developmental Disabilities Research Reviews 6, pp.148–58.
Runswick-Cole, K. (2008). Between a rock and a hard place: parents’ attitudes to the inclusion of children with special educational needs in mainstream and special schools. British Journal of Special Education 35 (3) pp.173-180
Scallan S., Senior, J., and Reilly, C. (2011). Williams Syndrome: Daily challenges and Positive impact on the Family Journal of Applied Research in Intellectual Disabilities 24, pp.181-188
[Cover photo © Embraceable]
Katherine Gulliver is an inclusion advocate from Plymouth, United Kingdom. She currently holds a scholarship for a Joint Erasmus Mundus MA in Special Inclusive Education at the University of Roehampton (UK), the university of Oslo (Norway), and the Charles University in Prague (Czech Repulic). Her main areas of interest are intellectual disabilities, inclusive education, and Williams Syndrome.