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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, emphasising the unfortunate fact that the higher rates of disability in multiples are not recognised 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 emphasised

(i) it 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 behaviour'-it certainly challenges our family. It seems everywhere we go as a family, Robert's behaviour 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 till 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 behaviours 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 comultiples of the disabled young person with 'challenging behaviours'. 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 behaviours within disability programs.
  
  
• to consider placing the multiples in different schools.

(ii) more broadly, perception of disability can matter more than the actual disability. Perception has four dimensions

• diagnosis Especially in the area of Cerebral Palsy there have 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 co-ordination".. If you deny one or more of your multiples has 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 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 adolescence 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
  • recognise 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 comultiple 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.