How does Down syndrome affect everyday life and what assistance is available to cope with the disorder?

Steve Day Communication Disorders Year 3 Spring Semester 2005 University of Cardiff, Wales

Reproduced with the permission of the author.

Imagine one of your own parents is suddenly struck down with Down syndrome. Imagine if your brother or sister mysteriously developed the disease overnight. Imagine your own child having this mental retardation out of the blue. Luckily, Down syndrome cannot be caught or contracted in any way post birth, so nobody is asked to imagine how their lives would be affected should a member of their family suddenly become subject to the condition. However, the National Institute of Child Health and Human Development (2005) suggests that 1 in every 800 live births is that of a child possessing the condition of Down syndrome. It is a harsh reality that thousands of people are affected by this disorder each year and people's lives are turned upside down by the introduction of this disorder into their everyday lives.

Down syndrome is a disorder that has so many aspects to it, it would be impossible for those connected with the condition to lead a normal life. As with many communication disorders Down syndrome constant care of the individual is needed and extra help is a necessity. Early language development and speech acquisition is a major factor so 'early intervention' in these areas is required during the early stages of a Down syndrome sufferer's life. Hodapp and Dykens (1991) identify an etiology-specific strategy towards early intervention, noting that more recent work as focused on unique approaches to different mental retardations rather than one vast approach to all retardations. Aid can come in the form of special educators, speech therapists, occupational therapists, and social workers. If a member of my family gave birth to a child with Down syndrome I would immediately seek out as much help and informative resources as possible. For someone who is not medically trained Down syndrome can produce a number of complications. As technology develops and the Internet's database of knowledge grows larger and larger, more and more help and information is becoming available to people interested in understanding not just Down syndrome but many other communication disorders.

In fact, it is the Internet that is vastly becoming the primary source of assistance for people who have only just become affected by Down syndrome. The National Down Syndrome Congress Center (NDSCC) is just an example of how the Internet incorporates the use of technology in not just assisting families affected by Down syndrome, but by using mailing lists and membership it brings these families together. It also offers a huge selection of services including a regular newsletter, information on the disorder, and the chance to donate money to help fund the fight against Down syndrome. The news section keeps members in touch with medical progress in the Down syndrome area and links to other Down syndrome related web sites, clinics and medical resources allow the member to explore the subject deeper should they feel it necessary to do so. The National Down Syndrome Society (NDSS) offers similar services. Once again, The NDSS displays a vast amount of help regarding research, medical information and emphasizes the community atmosphere of the membership it offers people. It focuses on making members feel as though they belong and ceases to make Down syndrome appear to be a social taboo, which it generally still is.

My hairdresser gave birth to a child with Down syndrome a number of years back and she explained how hard it was to give her son a fairly normal upbringing in society. She had to take a school to court so she could get her son into the local primary school. The school did not believe they could accommodate a child with Down syndrome even though he was only different in looks and had a slightly lower IQ than the majority of the other pupils. Eventually, she won her battle and as long as her son was accompanied in classes by a grown up assistant, then he was allowed to go to the primary school. This is just another example of how Down syndrome can affect a family. This also shows how Down syndrome is seen as an outcast disorder in the eyes of society. This factor of segregation by the education system of children with Down syndrome is something that every family affected by Down syndrome has to put up with. Most families would not put up the fight my hair dresser did when she took her battle to the courts. When equality is fought for, then prejudice has gone too far. There are still families out there where the education of the child suffers because school's turn their backs at the Down syndrome disorder. Previous linguists such as Kanner (1957) put forward the opinion that Down syndrome individuals are mostly placid and cheerful, but because they possess this genetic deficit people develop stereotypes of individuals with Down syndrome. After being discovered by J. Langdon H. Down (1866), it was re-discovered by Fraser (1876) who gave it the label of Kalmuc Idiocy. This name of the disorder emphasized society's opinion of the disorder and only increased discontent towards the disorder. Work by Fletcher-Beach (1882) did no help when he claimed that although Down syndrome individuals were generally cheerful and happy, they could be destructive and hyperactive. It is this prejudice that these families have to cope with. Yet, it is these prejudices that Down syndrome societies around the world seek to help families cope with.

National Association for Down Syndrome (NADS) has a web site that goes that little bit further than the NDSS and the NDSCC when it comes to the community aspect of these societies. The NADS web site incorporates a discussion forum into the layout, enabling individuals affected by Down syndrome to talk and discuss issues on a variety of topics. NADS even organizes fundraisers e.g. a Bowl-a-thon, seminars and holiday appeals. It offers not just information and resources on the disorder but also gives support to those affected by the disorder. This support undoubtedly proves to be invaluable when a family is confronted with the prospect of a new life involving a child with Down syndrome.

When a family is first faced with the prospect of a life based around Down syndrome, it can come as quite a shock. As already mentioned, the emotional aspect needs a lot of attention. With the help of such online organizations as NDSCC, NDSS and NADS, the emotional obstacles can be eased. The sense that there is an entire community who are enduring the same problems can facilitate the needs of the families affected by the disorder. However, there are more challenges brought about by Down syndrome, notably, the inclusion of diets in the life of a child with Down syndrome. Many children are subjected to dietary supplements that have altered and evolved as more and more is learnt about the disease. The NCPAD (National Centre on Physical Activity and Disability) holds information regarding the dietary aspect of DS. They take note of a high rate of obesity in children with Down syndrome. They say that reasons behind this could be:

• Medical concerns such as Gastroesophogeal Reflux Disease (GERD), hypothyroidism and a low metabolism.
• Medications being ingested by the individuals e.g. serotonin reuptake inhibitors.
• Lifestyle restrictions e.g. less friends, less exercise, less inclusion in society.

The NCPAD goes on to suggest reasons that can deal with these problems. Promoting a nutrient based diet, offer more fresh fruit and vegetables to make healthy eating more appealing, limit junk food and make exercise within the house hold more prominent. These suggestions by the NCPAD, which also include topics such as celiac disease (the inability of a person with DS to tolerate the protein, gluten), diabetes (a disease which DS people are more susceptible to), constipation, hyper and hypothyroidism, GERD, dentition and, of course, the all important vitamins and minerals dietary recommendations offer a more medical based assistance for those affected by Down syndrome.

Where as the services offered by NDSCC, NDSS and NADS are more emotionally and mentally based, the help put online by the NCPADS is more medical based and offers suggestions to help improve the more physical problems of DS in a child. Not only does the medical information offer the help needed on the topics listed above but it also takes into account the characteristics of individuals with DS. They are well renowned for being mimicry and like to get up to mischief (Smith and Jones, 1982), so when attempting to introduce dietary changes or exercise regimes, the children with DS can be quite awkward to persuade. Parents have been known to hide vitamin and mineral supplements in their child's food because the child would refuse to eat the food. Menolascino (1965) mentions how significant behaviour and emotional problems are still very much a part of their symptomatology. Persuading a child with DS that exercise would help improve their condition or at least lessen the risk of further complications is a very hard thing to do, especially if the child really does not wish to take part in additional exercise.

It is this difficulty in controlling the child where, if the worst happens, the parents may seek advice on putting the child into care or into an institutional environment where he/she can be cared for appropriately. Sometimes it may only be as the child grows older and the family system changes (Barrett, 1986) that the child will become more of a complexity to deal with. For instance, brothers or sisters leaving home, perhaps the parents suffer a divorce, or at worst bereavement. The slightest change in a family setting could cause the child to change dramatically. It is a problem that not even the most modern medicinal techniques or diets could improve.

Obviously, institutional care is avoided at all costs in most cases, but there are times when the parents are not ready to be parents, so if the child is retarded, then the parents have no choice but to give the child up and send them into care. Skotko (2005) uses the topic of prenatally diagnosed cases of Down syndrome to show how much of an impact the recognition of a prenatal diagnosis can have on the parents. The whole termination issue is very sensitive at this current moment in time, both politically and religiously. In these prenatally diagnosed cases despite 63% claiming to be unbiased physicians have admitted being biased and 10% even actively 'urge' the parents to accept a termination. 10% do the opposite and actively 'urge' parents to consider the positives of Down syndrome so they favour keeping the child. 4% of physicians actively persuade the parents to continue with the pregnancy, whether the parents believe it is a good idea or not. It is in an instance like this when the idea of an institutional setting for the child is probably the best option. The arguments for and against institutional care will rage on, but both institutional care and home care have their pros and cons. It has not yet been proven to see if constant social interaction with non-DS children improves their general social characteristics, but the majority of parents wish for their children to lead a normal life as possible. Wright (2001) does relate back to the Victorian times when those who were deemed 'mentally defective' were sectioned from society. The question does ask if institutional care actually helps those within it or whether it just separates those with the disorders from society and pushes them out of the way of 'normal' society. As for now, most parents do opt to keep their child in a natural home environment (Carr, 1995) rather than in an institutionalised environment that is not as natural and does not allow as much social interaction as the natural home environment would permit.

The Riverbend Down Syndrome Association is a non-profit organisation that has a substantial amount of resources in supporting parents who have children with DS. The web site alone contains information regarding home schooling, inclusion schooling, DS phenotype, life planning, supplements, drugs, therapies and much more. It really does cater for all needs. The RDSPSG site even goes to such intricate detail as giving a sample sheet of how to indicate on a guardian and trustees letter that your child has retardation and how it should be properly indicated. It focuses on the benefits and rights that disabled individuals are entitled too and also offers advice on financial planning.

In conclusion, using contact groups, academic readings, the Internet and other valuable resources it can be determined that there is such a great amount of information out there on Down syndrome and other communication disorders. Specifically for Down syndrome, everything is covered from the background of the disorder and its originations, right through to family planning and the best ways to cope with the disorder. Advice, contacts, links, memberships and online community forums are all at the disposal of people wishing to understand more about Down syndrome. The Internet has encouraged such a large amount of global interaction that it is now the biggest information resource in the world. Information, news and research on the topic of Down syndrome is now growing and being transferred across the globe at such a fast rate that the minute something new is discovered in the Down syndrome area, it is on the web and at the beck and call of those who require it almost instantly. From the NADS to the NDSS information and help is at a premium. As medical research discovers new ways of treating Down syndrome, parents can find out new approaches and techniques with just a few clicks. There is so much valuable information and aid out there, especially on the Internet that quite often the parents know more about the disorder than the doctors do. It is comforting to know that because of the Internet and support groups, those affected by Down syndrome can now have more help than ever and know they are not alone.

References

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