Down syndrome - more than just an extra chromosome
What is
Downs syndrome?
Down Syndrome means that a person happens to have an extra chromosome
number 21 (three instead of two). That is why Downs syndrome even is called
Trisomy-21. In Latin it is described as Morbus Down. Exactly how
the syndrome affects the person can vary very much. It is however clear
that one get some kind of retardation, but the spectrum is wide; from
light to serious.
Our son and his
development
When Sixten was born he was just a small baby (2,2kg) that just happened
to have one chromosome more than others. He needed the same care and love
as his twin sister.
He was born with very moveable joints and had a very low muscle tonus.
He needed to practice a lot to learn how to roll, sit and stand. We have
always stimulated him to move a lot.
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| From the age of nine months, Sixten has practiced his balance and strength on the ball. Here, his twin sister is playing. | He trains his balance and body apprehension in the water. |
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| He got baby massage from the day he was born. | Sixten has always appreciated songs with belonging movements. |
Sixten has a considerable language
delay. He was barely three years old when he said his first word ("Good
bye"), and some moths later he started to use signs to communicate.
We have used sign support, which is a simplified form of sign language,
as a complement to the spoken language since Sixten was six month old.
Language has not been something obvious to Sixten, so we have had to show
him that communication is the most amusing game of them all. We play with
him in the same way as he is able to play. The key words are "imitate"
and "match". We imitate his movements and sounds and makes
it to a take-and-give-play. The method is developed by James
MacDonald.
Sixten could actually read several words before he said his first word
verbally. He showed us by signing the words when he saw them. We parents
find reading very important and plays a lot with written words together
with Sixten.
Twins
Sixten is a twin, but his twinsister does not have down syndrome.
Having a twinsister is probably the best thing that could have happend
for Sixten. She has help him in so many ways. Whatever she does, he want
to learn it too! But it's the other way around too - she has gained a
lot from him; we leraned babymassage, watertraining and signing for his
sake - and she got it too.
Bilingual
When Sixten and his sister was born, their father thought a
lot about if he should talk Swedish or Czech with the children. The reason
why it ended up with Swedish was NOT because of Sixten's disabilities.
The main reason was that their father felt much more comfortable with
Swedish. Sixten meets however the Czech language through songs, fairy
tales and recorded children shows on TV.
Help and support
in Sweden
If you live in Sweden you have right to support from the society. At the
intervention center ("habilitering") you can get contact with
speech therapists, physiotherapists, almoner and others that are able
to give support to the family and the disabled child. At the social insurance
office ("försäkringskassan") you have the possibility
to apply for care contribution ("vårdbidrag"). With this
financial support we have been able to reduce our working time to spend
more time with him and his training.
The best help has been however from other parents. FUB, The
Association for retarded children, adolescents, and adults, arranges
meetings for families with children at several places in Sweden. These
meetings has been very valuable for our family.
About this web-page
In 1999, our first children were born; one girl and one boy. The boy had
Downs syndrome.