DISABILITY AND THE FAMILY
From Shere. M.O. (1956) Socio-emotional factors in families of the twin with cerebral palsy. Exceptional Children, 23:197-208.
This picture from Shere’s study in 1956 raises two questions :
(i) the image of the other twin in the background does emphasize the pathos of having a twin or higher multiple with a disability. How do you feel when they are getting their therapy and you are ignored?
(ii) this is the only study of its kind. There have since been many studies of siblings of disabled children and even some of the twins with a “disability” in the most general sense. But the impact of every disability is different and Shere was the only one who focussed in on just one key group. Now we have many more multiples and many more with Cerebral Palsy (who often in the past would have died).
In the 1990’s we often used the phrase “There is no disabled child, there is a disabled family”. We cringe in embarrassment at this now, since it is clear so many families with a disabled child are doing well. So also are the brothers or sisters of those with a disability. But consider this quote from Shere
“This study appears to suggest that the condition of cerebral palsy can be more harmful to the social and emotional development of the non-cerebral palsied child than it is to his cerebral palsied twin” (Page 206).
Impact Of Disability On Siblings And Parents
It is important to recognize that effects may differ between the parents, the non-multiple siblings and the co-multiples.
One thing parents and schools rarely recognize is the burden many multiples feel about supporting their disabled multiple in later life. There have been few adequate studies of multiples, but work with siblings aged as young as 8-9 years indicate they are already thinking about how they will contribute to support for their disabled sibling in adulthood. With multiples, the perceived obligation must be even greater. You may have other siblings, but
Being the twin or higher multiple of the disabled child, are you expected to be the one who will do the most in terms of support, once the parents can no longer manage?
How are parents potentially affected?
Many families will manage well but the following are some of the positive and negative issues that may arise
- increased understanding of disability and differences
- increased appreciation of own health and abilities
- increased helpfulness and sensitivity
- increased attention on the child with the disability
- increased marital dissatisfaction
- increased parental stress
- decreased well-being
- decreased social support
- impaired family recreation and socialization
It may seem too insensitive to give something as mechanical as a list of potential implications for the family, but it emphasizes how wide-ranging is the impact of the disability. For example
“After Ian was diagnosed with Cerebral Palsy, my husband really retreated into himself. It was not just that he did not support me or Michael and Peter (the other triplets). He made others feel uncomfortable, so they did not come around so much. It’s better now, but it was touch and go. I guess he has adjusted to the fact that the triplets were not going to the be the ‘mini football team’ he had been dreaming about during the pregnancy. I’m just hoping he is not putting too much on Michael and Peter.”
It can be more complex than this, especially when there is some dispute overdiagnosis. For example, Dad’s ‘active little sportsman’ is Mum’s concern over diagnosis of ADHD. Then where ADHD is seen (quite unjustly) to be a reflection on parenting, stigmatization comes to the fore, complicated further by the differences between the parents and their views. Along with this may be lack of support-if you think the child does not have a problem, then you may not go along with any intervention.
Siblings and multiples
A key question is how to work with siblings and the other multiples in a family where one or more multiples is disabled, especially given the issue of comorbidity. Most issues are general to all children in the family, although more intense with the co-multiples. They can be summarised as
- rejection by peers
- discomfort or difficulty in explaining to peers about multiple with disability
- less time/resources to engage in out-of-home activities
- less contact with friends
- increased teasing
- peers afraid or uneasy around multiple with disability
- the child assumes “Brother’s Keeper” role at school
- having to “achieve for two or more”
Why do some families and family members manage better than others?
In the last few years, one of the key emphases in disability work has been on differences in families-who copes better and why?
None of the studies have been on multiples, emphasizing the unfortunate fact that the higher rates of disability in multiples are not recognized and neither are the specific dynamics of the multiple birth family.
This would be a website in itself and there are just a few issues that need to be emphasized
(i) it may not be the disability but the consequences of it that matters. Sometimes this is where comorbidity is all important
“It is not Robert’s intellectual disability that is the big thing for Andrew (his twin). Robert has what they call ‘challenging behavior’-it certainly challenges our family. It seems everywhere we go as a family, Robert’s behavior really goes ‘ballistic’ and we have to leave. I cannot think of a barbeque or other function where we and Andrew have been able to stay until the end. The support workers are only there at school and they say Robert is getting better, which I guess is true. But they don’t see what impact he has on the family and his twin brother at weekends…..”
In one of our Australian studies, not of multiples but of brothers and sisters of intellectually disabled adolescents, what predicted problems in the siblings was exactly this. It was not the severity of the disability itself, but the presence of aggressive or inappropriate behaviors that mattered. How could you take a girlfriend home, knowing what your brother could be like?
It is bad enough for singleton siblings but much worse for co-multiples of the disabled young person with ‘challenging behaviors’. If the multiple with the disability is in the same school as the other(s), the school has to be alert to this situation. If it gets too bad, then really there are only two options:
- to use the multiple birth situation as the lever for obtaining very intensive intervention by the specialist teams that deal with ‘challenging behaviors within disability programs.
- to consider placing the multiples in different schools.
(ii) more broadly, the perception of disability can matter more than the actual disability. Perception has four dimensions
- diagnosis Especially in the area of Cerebral Palsy there has been several studies of differences between families in the acceptance of diagnosis. Sometimes families are convinced there is a problem well before the specialists. This may actually be easier in multiples, where they can see one of them is not developing as fast as the other(s). Or it may be more difficult as differences are attributed just to transient issues “Well he was the lightest at birth but he’ll get over it” or to multiple birth issues “Twins are often slow in developing motor coordination”.. If you deny one or more of your multiples have a problem, then the chances are less of your active involvement in intervention and in turn of the success of that intervention.
- causation Although the idea that Cerebral Palsy mainly occurs as the result of complications at birth has been refuted, every family with a disabled child wants to know ‘why’ and to find someone to blame:“This family was convinced there had been medical mismanagement of their second twin at birth, resulting in Cerebral Palsy. They fought this through the courts for years. Meanwhile, the healthy twin languished, while all the focus was on why things had gone so wrong with the other one.”
- Intervention at preschool or school for any multiple with a disability has a very specific connotation. It does not matter if the disability is Cerebral Palsy or Reading Disability. It is a formal recognition of differences between the multiples and one that is obvious to teachers, parents, multiples, and peers. The school needs to think about this, as it adds an extra dimension to the impact of intervention. It also may accentuate the stereotyping issue both at Preschool and School.
- prognosis or ‘What will this child be like as an adult?’. Intervention affects perceptions of prognosis. It now demonstrates not everything is right with this multiple. Prognosis has to be considered in terms of its implications for adolescents and also to adulthood. It does not matter what the disorder is-families need to know as precisely as possible just what this child with a disability will be like as an adult. It may be Cerebral Palsy, where there could be questions of ongoing support-does this have to come from the other multiple(s)?. It could be ADHD as some end up in the justice system-do you feel an obligation to bail out your twin? Both of these are larger issues than multiples, but emphasize the need for the parents and multiples to have good support and information from the professionals dealing with the disabled multiple.
(iii) individual differences in coping. This is not unique to multiples. There is a whole literature on young people coping with every sort of family stress from divorce to parents with mental illness. And two things seem to matter, irrespective of what sort of problem it is
- Understanding The young person is ahead who can
- grasp what the problem is with their multiple brother or sister
- recognize it is not their fault
- understand why Mum and Dad are sometimes not as happy as other parents
- acknowledge they have some responsibility to the disabled multiple, but not all responsibility
- not feel pressured to achieve, just because the other(s) cannot
- feel confident in explaining to friends about how life at school and at home are affected
- not attribute everything that goes wrong to having a co-multiple with a disability. It is too easy to blame everything from doing badly at school to being the last one in the class to have a partner to this one event.
- Temperament Some children and adults cope better than others with life events. If the smallest crisis is perceived in the family as a major drama than disability will not be handled well. Parents need to think very carefully about everything APART from the multiple with a disability. What message is being given to the one(s) without a disability about how to handle problems in general and not just this specific one?
The story is not all dark. Some of the studies of siblings of the disabled have shown they are more likely to enter the ‘helping’ professions. They have a better understanding of and sympathy with differences among members of the community. The school has a role to play in ensuring the best outcome, not only for the multiple who has the disability but also for the other(s). At the same time, disability services need to ‘think multiples’. With the pressure of work, they often just focus on the child with the disability or at best engage the parents.
But intervention in a multiple birth family needs to involve the other multiple(s) and this should be part of the service plan for the family.
What would you do?
John is 16. His twin brother Alan has Cerebral Palsy and is at the same school. Alan can get around OK but his language and his upper body skills are not great, so first he is not doing so well academically and secondly he is conspicuous.
John is getting resentful. Apart from the jokes about his brother, John is sure Alan is the reason why he does not have a girlfriend, while most of his friends do. He is talking of dropping out of school and leaving home.
(i) what could have been done earlier, that would have made things better for John now?
(ii) what can happen at home and at school now to make things better for both John and Alan?
(iii) would the situation be different if Alan had had ADHD rather than Cerebral Palsy?
References: See here