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Major Disability

In the USA, federal legislation mandates support for children with reading disability or ADHD. In many other countries, the situation is very different. The UK has limited residential support for very disabled children , while Australia has minimal out of home resources (apart from respite care) , arguing these children should remain in the family and the community. This section concerns families where in Australia there would be support from Disability Services and where in the UK they would be classed as Special Needs, with access to financial and/or personnel support.

Many of the mutiple birth organisations listed in Multiple Links have resource material on disability for families and the Multiple Births Foundation has some also for professionals.

OF ALL PARTS OF THE WEBSITE, THIS IS THE ONE WHERE LOCAL QUESTIONS AND RESOURCES ARE MOST LIKELY TO APPLY AND THUS ONLY SOME GENERAL ISSUES ARE RAISED, MAINLY ABOUT EFFECTS ON THE MULTIPLE BIRTH FAMILY.

Where does support come from?

Consider this quote

" I really wanted support after Michael was diagnosed with cerebral palsy. But I found it difficult at the twins group for me and also for the other mothers. They were so happy about their twins. Yes, they complained about sleep and so on, but this was nothing compared to what we were facing. I almost felt embarrassed when I said Michael had a major problem and you could see them thinking "Thank God it was not me". I got upset too, as their twins played together and my other twin Jonathon got so little response from Michael. It was so different from what my husband and dreamt about with the twins playing happily together. I started going more to the Cerebral Palsy Association as I felt the other mothers knew what the problems were, but then Jonathon did not fit in. We need something just for us."

Parents may need to be proactive. Linda McDonald is a Queensland mother of twin boys, Isaac and Kyle. As she puts it positively "Isaac is challenged with Down Syndrome". She put together the experiences of families who have multiples with Down Syndrome and privately published the book

These are our Children
Twins, Triplets and Down Syndrome

So it is available not in bookshops but directly from her at
4, Sugar Gum Drive,
Mooloolah, Queensland, Australia, 7147

This book says much more than we can about how multiple birth families come to terms with such significant disability. It emphasises the fact that the combination of multiple births and a specific disorder may be sufficiently rare that you may have to work hard to find other families in just the same situation as yourselves. But there are three common areas where multiple birth and disability coincide:

• Cerebral palsy
• Sensory difficulties
• Intellectual disability

The first two of these are most closely related to a multiple pregnancy and the consequences of very preterm birth. The last is more complex. Sometimes it is related to multiple births and recent analyses of multiple birth children registered with the Disability Services Commission in Western Australia show two things

(i) about 40% of twins with Cerebral Palsy also have Intellectual Disability.

(ii) there is another group of multiples, who do not have Cerebral Palsy but only Intellectual Disability. They are not nearly as premature as those with Cerebral Palsy but are more likely to have had Intrauterine Growth Retardation-the pregnancy has gone the expected 36-37 weeks, but the multiples are not as heavy as would be expected.

Intellectual Disability may also occur for many other reasons which may have something to do with multiples (such as Down Syndrome and Fragile-X Syndrome) or which may be totally unrelated. Where there is a genetic disorder (and there are over 200 genetic disorders that can lead to Intellectual Disability), then support from the local Genetic Counseling Service is obviously appropriate. Syndrome means a constellation of symptoms- for example children with Down Syndrome often have heart problems- and thus ongoing paediatric management is essential. Parents will be all too aware of this, but school staff may be less familiar with the fact that physical and intellectual disabilities often occur together. Repeated hospitalisations and the interruption to schooling can compound the effects of the Intellectual Disability.

One issue that verges between research and family support is that of MZ twins who are discordant for a genetic disorder. There are some MZ twins where one has Down Syndrome while the other is fine. There are some rare genetic disorders such as the Beckwith Syndrome that usually differs between MZ twins. Disorders that are on the X chromosome may well mean that female twins are discordant, in terms of which X chromosome is activated. These do need a genetic counselor to help explain what is happening and the implications for the family. Such disorders are rare and may be fundamental in understanding gene functioning, but is this any consolation for the multiple birth family?