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 personal support.

Many of the multiple birth organizations 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.”

down_sydrome

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

Linda McDonald
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 pediatric 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 hospitalizations 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?

 

Schooling of a multiple with disability

The thing all families want in this situation is some idea of what their child who has been labeled as having a “disability” will be like as they develop.

  • can they remain in the same school as the other multiple(s) in the family and if so for how long?
  • what are they likely to be like in adulthood and what are then the implications for whether they can care for themselves?

It may sound extreme to be discussing this when the multiples are still just at the stage of starting school, but every family is already thinking about this. A frequent issue in the disability literature is WIAG (“When I am Gone”) with parents wondering who will care for their disabled child after they are too old.

So assessment of disabled children has many connotations and especially so in multiples. Taking the multiple with a disability out of the mainstream education system or even keeping them back a year at school is a formal message to the family that this child is “different” from the other multiple(s).

This decision is basically irrevocable and a child in such a situation can never again catch-up with their multiple siblings. So it needs to be made with the maximum amount of information from formal assessment. This may not be so easy. In younger children, the fact that multiples take time to catch-up with others needs to be considered, as do some of the specific problems in areas such as language development. So the older the child(ren) at the time of assessment the better, as this leads to more accurate prediction of what life will be like in adulthood. Against this must be weighed the needs of the family and the school to know as soon as soon as possible. This leads onto how the family adjusts to life with one or more multiples who have disabilities.

 

 

 

References: See here

 

 

 


Christina Gaines

My name is Christina Gaines. I am a wife, mother, and grandmother offering practical advice, resources, and encouragement to parents as they go through the amazing journey of helping their children grow into joyful, confident, positive adults! I absolutely LOVE kids and love to help people. I love to travel and I love living and playing on the lake.