Et anderledes barn - Landsforeningen Downs Syndrom

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Et anderledes barn - Landsforeningen Downs Syndrom
“A d i f f e r e n t c h i l d ”
Having a child with Down’s syndrome
“E t a n d e r l ed e s ba r n”
Om at få et barn med Downs syndrom
Landsforeningen Downs Syndrom
Published by and copyright National Down’s
Udgivet af og copyright
Syndrome Association 2002
Landsforeningen Downs Syndrom 2002
President: Kitt Boel, Koltvej 35, 8361
Formand: Kitt Boel, Koltvej 35,
Hasselager. Tel. 27 34 04 77.
8361 Hasselager. Tlf.: 27 34 04 77.
e-mail: [email protected]
e-mail: [email protected]
Produced with gratefully received support
Produceret med støtte fra og tak til:
from: Rådighedspuljen, Dronning Margrethe
Rådighedspuljen
og Prins Henriks Fond, Oberst H. Parkovs
Dronning Margrethe og Prins Henriks Fond
Mindefond, Prins Joachim og Prinsesse
Oberst H. Parkovs Mindefond
Alexandras Fond, Mads Clausens Fond
Prins Joachim og Prinsesse Alexandras Fond
Mads Clausens Fond
Editors: New Parents Committee
Editor-in-Chief: Annette Sølvbirk
Redaktion: Nybagte Forældre Udvalg
Ansvarshavende redaktør: Annette Sølvbirk
We extend our thanks to the children at
Lærkereden (The Lark’s Nest) and
Tak til børnene i institutionerne Lærkereden
Sommerfuglen (The Butterfly) and to
og Sommerfuglen samt til tekstforfatter
copywriter Jacob Hagensen.
Jacob Hagensen.
Graphic design: Charlotte Esmann
Grafisk design: Charlotte Esmann
DTP: Maria Jørgensen og
Rentegning: Maria Jørgensen og
Morten Hagstrøm
Morten Hagstrøm
Photography: Tor Jørgensen
Tryk: Boisen & Nielsen A/S
Printed by Boisen & Nielsen A/S
Foto: Tor Jørgensen
3
·
Our heartfelt congratulations
Hjerteligt tillykke med dit barn
The child you now have is probably not
grapple with in the early days: Why have I
Du har fået et barn, som nok ikke er, hvad du
første tid: Hvorfor har jeg fået et barn med
what you expected, but it is your child. This
got a child with Down’s syndrome? How will
forventede, men det er dit barn.
Downs syndrom? Hvordan vil barnets liv
booklet is the work of a number of parents of
the child’s life turn out? It has helped us
children with Down’s syndrome. We have all
greatly to have contact with other parents of
Denne pjece er samlet af en lang række for-
tried to face the challenge of the new little
children with Down’s syndrome. So we have
ældre til børn med Downs syndrom. Vi har
Det har hjulpet mange at få kontakt med
life in our hands and have felt uncertainty,
included a page in this booklet which has
alle prøvet at stå med et lille nyt liv i hæn-
andre forældre til børn med Downs syndrom.
sorrow and anger: a world turned upside
been written by the local parents group in
derne og har mærket usikkerhed, sorg og
Derfor er der en side i pjecen her, der er
down. We can’t diminish the feelings you and
your region. It includes a description of what
vrede: Vores verden blev vendt på hovedet.
skrevet af den lokale forældregruppe i dit amt.
your closest relatives will have, but we hope
the group does and how to get in contact with
that this booklet can help you prepare for the
them. You can also share this booklet with
Vi kan ikke tage dine følelser fra dig og dine
little newcomer’s future.
your family and friends – it can help them to
nærmeste, men vi håber, at denne pjece kan
better understand your own situation.
være en hjælp til det nye liv, som venter.
forme sig?
Her kan du se, hvordan du kan få kontakt med
dem, og hvad de laver.
Du kan også give denne pjece til familie og
venner – det kan hjælpe dem til at forstå den
In the course of time all our children become
a natural part of our families. The sorrow and
And do remember that you can always visit
Vores børn er alle med tiden blevet en natur-
disappointment we experience to begin with
the National Down’s Syndrome Association
lig del af vores familier. Den sorg og skuffelse,
are slowly but surely replaced by a feeling
website to find further information about
Kitt Boel
vi oplevede i den første tid, er langsomt og
Du kan altid klikke dig ind på Landsforeningen
Med venlig hilsen
of pleasure and pride in our children. Their
Down’s syndrome. The Internet address is:
President
sikkert blevet afløst af glæden og stoltheden
Downs Syndroms hjemmeside, for at finde
Kitt Boel
spontaneous enthusiasm and implicit trust
www.downssyndrom.dk
National Down’s Syndrome Association
over vores børn. Deres spontane begejstring
yderligere oplysninger om Downs syndrom.
Formand for Landsforeningen Downs Syndrom
og tillid er meget livsbekræftende for deres
Adressen er: www.downssyndrom.dk
are very life-affirming. Many enjoyable moments await you.
Once again, congratulations on your new
omgivelser. Der venter dig mange glæder.
Endnu en gang tillykke med barnet og velkom-
child. And to the little one, a big welcome
We have collected some useful information
to the world.
Vi har samlet nogle nyttige informationer om
about Down’s syndrome which we hope will
Downs syndrom, som kan besvare nogle af
answer some of the questions that many
de spørgsmål, som mange tumler med den
·4
situation, du er i.
men til verden til den lille ny.
5
·
D o w n ’s s y n d r o m e
Downs syndrom
By Peter Bækgaard
Af Peter Bækgaard, overlæge
Consultant Paediatrician, Glostrup County Hospital
Børneafdelingen, Glostrup Amtssygehus
What is Down’s syndrome?
to note that Down’s syndrome occurs with
trisomy 21 (from the Greek and Latin tri-,
Hvad er Downs syndrom?
at nævne, at Downs syndrom forekommer
det næsten altid drejer sig om, at barnet har
Down’s syndrome gets its name from the
approximately the same frequency in all
meaning three), because the child always has
Navnet Downs syndrom stammer fra den
nogenlunde lige ofte i alle etniske befolknings-
fået et ekstra kromosom på kromosompar nr.
English doctor John Langdon Down, who first
ethnic groups. This means that lifestyle and
an extra chromosome located on chromo-
engelske læge John Langdon Down, som i
grupper, hvilket også betyder, at levevis og
21. Derfor har barnet 47 kromosomer i stedet
described the condition in 1866. It is the most
external influences do not play any role in
some pair no. 21. As a result, the child has 47
1866 beskrev tilstanden. Det er den hyppigste
ydre påvirkninger ikke spiller nogen rolle for
for de 46, som er det normale antal.
frequently occurring chromosomal disorder
causing the chromosomal disorder in the
chromosomes instead of the normal comple-
kromosomforstyrrelse, som man kender hos
årsagen til kromosomforstyrrelsen hos de
in children; on average out of every 900 births
individual parent couples.
ment of 46. This extra chromosome most
børn. I gennemsnit bliver der født én med
enkelte forældrepar.
commonly originates from the mother’s egg
Downs syndrom for hver 900 børn, der fødes.
one child is born with Down’s syndrome. In
Denmark about 70 children are born with
80
Down’s syndrome annually – of which a few
more are boys than girls. The frequency of
60
children born with Down’s syndrome increases
markedly with the woman’s age. For women
40
in their twenties, one child out of 1600 is born
with Down’s syndrome, whereas for women
20
in their forties the frequency is one in every
cell which has not separated off half of its
I Danmark fødes der omkring 70 børn med
chromosome pair no. 21 before fertilisation.
Downs syndrom om året – lidt flere drenge
When the sperm cell’s single chromosome
end piger. Hyppigheden af børn født med
no. 21 is added, the new embryo is then
Downs syndrom stiger stærkt med kvindens
equipped with three no. 21 chromosomes.
alder. For kvinder i 20-års alderen gælder, at
Formed in this way, it is called free trisomy.
for hver 1600 børn der fødes, har én af dem
Another variant is known to occur rarely.
Downs syndrom, for kvinder i 40-års alderen
In this case the extra chromosomal material
gælder, at for hver 100 børn har én af dem
Downs syndrom.
Det ekstra lille kromosom stammer
oftest fra moderens ægcelle, som ikke har fået
fraspaltet den ene halvdel af sit kromosom-
80
60
par i tide. Sammen med sædcellens enlige
kromosom nr. 21 udstyres det nye foster
*
derfor med tre kromosomer nr. 21 – såkaldt
*
40
fri trisomi.
Den anden variant forekommer kun
meget sjældent. Her optræder det ekstra
20
kromosommateriale svarende til kromosom
nr. 21 på en anden måde, kaldet translokation.
0
corresponding to chromosome no. 21 behaves
Number of children born with
in another way, called translocation. This form
increases with age, it is almost only women
Down’s syndrome 1985-2000
of Down’s syndrome is – in contrast to free
alderen, er det næsten kun kvinder under 35
i perioden 1985-2000
under 35 who give birth to children with
Source: Cytogenetic Central Register, Århus.
trisomy 21 – an hereditary form. Finally there
år, som føder børn med Downs syndrom.
Kilde: Cytogenetisk Centralregister, Århus.
goler, hvilket vil sige, at der hos barnet optræ-
Down’s syndrome. This is because Denmark,
*) excludes Fyn County
is a third form known as mosaic mongolism,
Dette skyldes, at vi her i landet – som i flere
*) excl. Fyns Amt
der både normale celler med 46 kromosomer
in which both normal cells with 46 chromo-
andre lande – først tilbyder fostervandsprøve
100 births.
However, even though the frequency
in common with several other countries, first
Selv om hyppigheden således stiger med
0
Denne form for Downs syndrom er – i mod-
Antal fødte børn med Downs syndrom
sætning til fri trisomi 21 – en arvelige form.
og celler med 47 kromosomer. Symptomerne
offers amniocentesis or placental biopsy –
There are three kinds of chromosome
somes and cells with 47 chromosomes appear
eller moderkagebiopsi til gravide over 35 år,
Der findes tre slags kromosom-
the tests used to discover Down’s syndrome
disorders
in the same child. The symptoms in these
så her er der chance for at opdage Downs
forstyrrelser
– to pregnant women over 35. It is important
Down’s syndrome is more technically called
children are often somewhat milder.
syndrom. Det er vigtigt i denne sammenhæng
Downs syndrom kaldes også trisomi 21, fordi
·6
Endelig taler man også om mosaikmon-
hos disse børn er ofte lidt mildere.
Når man på fødegangen eller barselgangen har fået mistanke om, at barnet kan
7
·
When it is suspected on the maternity
Down’s syndrome. The newborn child will
infant is to have the heart examined, and the
med Downs syndrom naturligvis også deres
som kan helbredes, men man er i stand til at
ward or post-natal ward that a child could have
probably already show evidence of some
doctor will do this at an early stage. By lis-
forældre og har familiens træk.
rådgive vedrørende stimulation, fysioterapi
Down’s syndrome, a blood test can be taken
slackness in the muscles, which are more
tening to the heart and comparing it with the
following parental consent. The results of the
soft and moveable than usual. The child
infant’s colour and breathing, a good assess-
og de lidt skrå øjenspalter med en særlig
chromosome test are known after 24-48 hours,
may also have a rather quiet disposition.
ment of the child’s condition can be made.
hudfold (mongolfold eller epicanthus), og det
Følgesygdomme
and it is only this test which can reveal whether
Most suck well at the breast or bottle but
About 4 out of 10 children with Down’s syn-
er her udtrykket mongolisme eller mongolbørn,
Det allervigtigste for den nyfødte er at få
the child has a chromosome disorder and if
some may need supplements, possibly via
drome have a deformity in heart which must
som børn med Downs syndrom tidligere blev
undersøgt hjertet, og det gør lægen en af de
so, which of the three types it is.
a tube into the stomach. Infants with Down’s
be examined carefully. It is therefore the rule
kaldt, stammer fra. Det nyfødte barn vil nok
første dage. Ved at lytte på hjertet og sammen-
syndrome have a greater tendency to bring
that all children with Down’s syndrome are
allerede i dagene efter fødslen være lidt mere
holde det med kulør og vejtrækning får man
Characteristic features of infants with
something up from the stomach, but this
examined at an early stage using ultrasound
muskelslapt samt blødt og bevægeligt end
en god vurdering af forholdene. Godt 40% af
Down’s syndrome
disappears after babyhood.
(echo cardiography), because it can be diffi-
forventeligt; måske også lidt mere stilfærdig i
alle børn med Downs syndrom har en større
Nogle af de fælles træk er den lille næse
og andet samt undersøge for komplikationer.
sin væremåde. De fleste sutter godt ved brys-
eller mindre misdannelse i hjertet, som skal
gives the child a characteristic look and com-
healthcare sector is familiar with Down’s
stethoscope. Fortunately, only a few children
have Downs syndrom, tilbyder man efter aftale
tet eller af flaske, men nogle må have tilskud,
undersøges nøje. Derfor er det en hovedregel,
mon features. But just like other children,
syndrome. Naturally the extent of knowledge
need more thorough treatment in the form of
med forældrene en blodprøve på barnet. Der
evt. med sonde. Børn med Downs syndrom
at alle børn med Downs syndrom på et rela-
children with Down’s syndrome naturally also
can vary, but it is certain that everyone will
medication or possibly a heart operation.
er svar på prøven i løbet af 1-2 døgn, og det
gylper ofte mere end andre, men det hører
tivt tidligt tidspunkt skal undersøges med
acquire looks and features from their parents
know that special caring needs are involved.
Two paediatric surgery centres in Denmark
er kun en kromosomundersøgelse, som kan
op efter spædbarnsalderen.
ultralyd (ekkokardiografi), fordi det kan være
It is important to emphasise that Down’s
carry out the preliminary examination and
afsløre, hvilken af de tre typer der er tale om.
Down’s syndrome is a stable condition which
and family line.
Almost everyone who works in the
cult to reveal the necessary details with a
Stort set alle personer, der arbejder i
svært at afsløre hjertedetaljerne i stetoskopet.
syndrome itself is not a disease which can be
possible operation, namely “Rigshospitalet”
sundhedssektoren kender til Downs syndrom.
Heldigvis er det kun enkelte børn, som har
and characteristic eye shape with a special
cured, but examinations for possible compli-
in Copenhagen and Skejby Hospital in
Karakteristiske
Naturligvis ikke lige grundigt alle sammen,
behov for mere indgående behandling i form
fold of the skin at the inner edge of the eye
cations may be carried out, as well as advice
Århus.
fællestræk hos spædbørn
men det er helt sikkert, at alle ved og kan for-
af medicin eller måske hjerteoperation. To
(epicanthus). It is this feature, a notable
given regarding stimulation, physiotherapy etc.
Diagnosen Downs syndrom betyder, at det
tælle, at det drejer sig om børn med særlige
børnekirurgiske centre her i Danmark fore-
behov for omsorg og pleje.
tager forundersøgelse og eventuelt operation,
Common features include the small nose
A special gastrointestinal examination may also be necessary, because chil-
drejer sig om en stabil tilstand, som giver
which led to the terms mongolism or mongol
Complications
dren with Down’s syndrome can have some
barnet et karakteristisk udseende og fælles
being formerly used to describe children with
The most important priority for the newborn
inborn strictures. Another minor problem is
træk. Men ligesom andre børn ligner børn
characteristic of the people of Mongolia,
·8
Det er vigtigt at understrege, at Downs syndrom som sådan ikke er en egentlig sygdom,
nemlig Rigshospitalet i København og Skejby
Hospital i Århus.
9
·
the tendency to constipation, which in the
Paediatric examinations
time when they usually speak their first words.
vast majority of cases can be handled with a
It is important that the child is offered the
change of diet or suitable medication.
common paediatric examinations and vacci-
During the first weeks, an eye examina-
Måske kan det blive nødvendigt med
lungebetændelse. Den anden halvdel af børn
grovmotoriske færdigheder samt sprog og
But there are big variations in development.
særlige mave-tarmundersøgelser, fordi
med Downs syndrom har faktisk ikke væsent-
indlæring. De fleste lærer at gå alene omkring
Most learn to read satisfactorily, but numbers
børn med Downs syndrom kan have nogle
lig flere infektioner end almindelige børn.
to-års alderen, hvor de første småord også
nations provided by the GP. In addition the
and arithmetic can cause problems. When
medfødte forsnævringer. Et mindre problem
tion is usually carried out. A small percentage
Danish National Health Service recommends
the children become adults, the vast majority
er i reglen tendensen til tarmforstoppelse,
Børneundersøgelser
i det enkelte barns udvikling. Hovedparten
(1-2%) of children develops lens opacity which
that the child is also vaccinated against hepa-
will be able to live for example in shared ac-
som i de allerfleste tilfælde klares med
Det er vigtigt, at børnene tilbydes de alminde-
lærer også at læse lidt, men tal og regning kan
reduces vision; this needs to be assessed and
titis (hepatitis B). There can be many other
commodation, but they will always need help.
kostændring eller medicintilskud.
lige børneundersøgelser og vaccinationer hos
volde problemer. Når børnene bliver voksne,
monitored by an eye specialist. Later on, there
subjects to discuss, and the GP may make a
It is difficult to predict exactly how your child
Inden for de første uger, er det klogt at få
den praktiserende læge. Derudover anbefaler
vil de allerfleste kunne bo i f.eks. et bofælles-
will be a further need for examination by an
hospital referral, if a paediatrician has not
will develop. But it is known that children with
foretaget en øjenundersøgelse, fordi et par
Sundhedsstyrelsen, at der også vaccineres
skab, men de altid vil have brug for hjælp.
eye specialist since in many cases there are
already offered follow-up for the child and
Down’s syndrome who are helped and stimu-
procent af børnene udvikler en linseuklarhed,
mod leverbetændelse (hepatitis B). Der kan
errors of refraction (hence a need for glasses)
family at a paediatric outpatient clinic. Here,
lated can progress far in their development.
som giver synsnedsættelse og som skal vur-
være mange emner at diskutere, men måske
dit barn vil udvikle sig. Men man ved i dag,
and a tendency for children with Down’s syn-
more regular checks can be offered accord-
Work is still being carried out on developing
deres og følges af øjenlægerne. Senere er der
vælger lægen at henvise til en af amtets børne-
at børn med Downs syndrom, der hjælpes
drome to squint.
ing to guidelines described in “Checklist for
new knowledge and methods for helping chil-
også behov for øjenlægekontrol, da der er
afdelinger, hvis ikke allerede børnelægerne
og stimuleres, kan nå langt i deres udvikling.
children with Down’s syndrome”. (Checklists
dren with Down’s syndrome.
kommer til. Men ellers er der stor variation
Det er svært at forudsige, hvordan netop
stor hyppighed af brydningsfejl (brillebehov)
har tilbudt barn og familie en opfølgning på
Der arbejdes stadig på at udvikle ny viden
hearing must be tested, since ear infections
are reprinted in “På vej – En vejviser til børn
og tendens til at skele hos børn med Downs
børneambulatoriet. Her kan man tilbyde en
og metoder til at hjælpe børn med Downs
are a problem in around half of all children
med Downs syndrom i førskolealderen”, see
syndrom.
mere regelmæssig kontrol efter retningslinier
syndrom.
with Down’s syndrome (the other 50% have
the reading list).
During the first six months, the child’s
I løbet af det første 1/2 leveår skal man
tage stilling til, om hørelsen er helt i orden.
no more infections than ordinary children).
Tendensen til infektioner er et problem
beskrevet i “Checkliste for børn med Downs
syndrom”. (Checklister er optrykt i “På vej –
Ear problems are usually associated with viral
Development and the future
diseases like the common cold, influenza etc,
Children with Down’s syndrome have delayed
hos over halvdelen af børn med Downs syn-
but sometimes bacterially-caused complica-
development in both coarse and fine muscu-
drom. Oftest drejer det sig om virussygdomme
tions like inflammation of the middle ear,
lar abilities, as well as in language and learn-
som almindelig forkølelse, influenza og lig-
Fremtid og udvikling
bronchitis and pneumonia can occur.
ing. Most learn to walk on their own when they
nende, men også bakterielle komplikationer,
Børn med Downs syndrom er forsinkede i
are around two years old, and this is also the
såsom mellemørebetændelse, bronchitis og
deres udvikling, hvilket gælder både fin- og
· 10
En vejviser til børn med Downs syndrom i
førskolealderen”, se litteraturliste).
11
·
We l c o m e t o H o l l a n d
Ve l k o m m e n t i l H o l l a n d
By Emily Perl Kingsley
Af Emily Perl Kingsley
I am often asked what it is like to have and
It is not an awful, nasty, dirty place, plagued
great, great importance. But if you use your
Jeg bliver ofte spurgt om, hvordan det er at leve
været der et stykke tid og har fået vejret, ser
bring up a disabled child.
with hunger and disease. It is just a different
life to mourn over the fact that you never got
med og opdrage et barn med handicap.
du dig omkring … og opdager efterhånden, at
This is my reply:
place. So you have to go out and buy new
to Italy, you will never be free to value and
Det er sådan her:
der er vindmøller i Holland … og Holland har
tulipaner. Holland har endda Rembrandt.
guidebooks. You have to start learning a new
enjoy what is very special, and really wonder-
To be expecting a child is like planning a
language. And you will meet new types of
ful… about Holland.
dream trip to Italy. You buy lots of guidebooks
people, who you would otherwise not have
drømmerejse til Italien.
Men alle, du kender, har travlt med at rejse til
and make fantastic plans. The Colosseum,
met.
Du køber en masse rejsehåndbøger og lægger
og fra Italien … Og de praler af, hvor vidunder-
At vente et barn er som at planlægge en
eventyrlige planer. Colosseum, Michelangelos
ligt de havde det der. Og resten af dine dage
You learn useful terms in Italian. Everything
The pace of life is different too, slower than
David, gondolerne i Venedig. Du lærer dig
vil du sige: “Ja, det var der, jeg skulle have
is very exciting.
in Italy; and not so magnificent. But after a
nyttige vendinger på italiensk. Alt er meget
while, when you have got your breath back,
spændende.
Michelangelo’s David, the gondolas in Venice.
været; det var det, jeg havde planlagt”.
Men der er lavet om på fartplanen. Maskinen
er landet i Holland og der må du blive.
Og smerten ved det vil aldrig, aldrig, aldrig
After months of excited expectation the day
you look around… and begin to discover that
finally arrives. You pack your suitcases and
there are windmills. And tulips. Holland even
Efter måneders spændt forventning kommer
leave. Several hours later the plane lands.
has Rembrandt.
endelig dagen. Du pakker dine kufferter og
Det er vigtigt, at de ikke har ført dig til et ræd-
tager af sted. Flere timer senere lander ma-
somt, fælt, snusket sted, fuld af pest, sult og
But everyone you know is busy travelling to
skinen. Stewardessen kommer ind og siger:
sygdom. Det er bare et sted, som er anderle-
Men, hvis du bruger dit liv til at sørge over
and from Italy. And they tell you what a
“Velkommen til Holland”.
des. Så du må ud og købe nye rejsehåndbøger.
den kendsgerning, at du ikke kom til Italien,
Og du må til at lære et helt nyt sprog. Og du
bliver du aldrig fri til at værdsætte og nyde
møder en helt ny type mennesker, du ellers
det helt specielle, det virkeligt vidunderlige …
ikke ville have mødt.
ved Holland.
The cabin steward says: “Welcome to Holland”.
“HOLLAND?!?” you exclaim.
wonderful time they had there. And for the
“HOLLAND?!?” råber du.
nogensinde fortage sig …, for tabet af den
“What do you mean, Holland? I booked a flight
rest of your days you will say: “Yes, that was
to Italy! I should be in Italy! All my life I have
where I should have gone; that was what I
dreamed of going to Italy”.
planned”.
bestilt en rejse til Italien! Jeg skulle være i
Det er som sagt et sted, der bare er ander-
But the travel plan has been changed. You have
The pain never passes away, not ever… be-
Italien! Hele mit liv har jeg drømt om at
ledes. Tempoet er langsommere end i Italien;
landed in Holland and there you must stay.
cause the loss of the big dream is a loss of
komme til Italien”.
der er ikke så pragtfuldt. Men når du har
· 12
store drøm er et tab af stor, stor betydning.
“Hvad mener du med Holland? Jeg har
13
·
Jeg
synes bare, det var så
hamrende uretfærdigt, at jeg fik
et mongolbarn. Det eneste, jeg havde
Parental thoughts
Fo r æ l d r e t a n ke r
lyst til, var at skrige. Samtidig ønskede
jeg, at hun måtte dø. Det var skræmmende. Hvilken ravnemor. Heldigvis
opdagede jeg, at det var en helt
normal reaktion.
Over time I have realised that she couldn’t
How will it affect the relationship between
What an unnatural mother. Fortunately I
Med tiden har jeg indset, at hun ikke kunne
Hvordan vil det påvirke forholdet mellem
end up other places than with us. We have
me and my husband?
discovered that it was a completely normal
ende andre steder end hos os. Vi har fået
mig og min mand?
reaction.
hende, fordi vi er de bedste til at tage sig af
her because we are the best for taking care
of her.
God, now I will never have any grandchildren.
hende.
It was a turning point for me to meet other
parents of children with Down’s syndrome.
Do I now have a child who will live at home
It was nice to meet people in the same situa-
for ever?
Det var et vendepunkt for mig at møde andre
forældre til mongolbørn. Det var rart at møde
Gud, nu får jeg aldrig nogle børnebørn.
nogle i samme situation og alle de forbudte
tanker fik frit løb. For at opdage at de andre
tion and share the suppressed thoughts.
What do I say to the neighbours when we
To discover that others have just the same
Do I dare to hope that he dies during the
Hvad skal jeg sige til naboerne, når vi kom-
såmænd havde de samme tanker. Og det var
come home with her? Will they come and
thoughts. It was exciting to see other children
operation?
mer hjem med hende? Vil de komme og se
spændende at se de andre mongolbørn og
see her and be disgusted?
with Down’s syndrome and see how much
hende og væmmes?
se, hvor meget de i grunden kan. Jeg glæder
When I look at her, will I ever be able to see
The psychologist discovered that we were
time we meet.
both hoping Christian had died – and we
Når jeg kigger på hende, vil jeg så nogen-
found out that it is completely normal in this
sinde kunne se vores træk i hende?
our own features in her?
Whatever he wants to do, we will support it.
She will always be super-smartly dressed.
Now I have an ugly child that everyone will
They say children with Down’s syndrome are
situation. The psychologist expressed what
always happy. What a load of nonsense.
we felt: “You have lost the child you expected
Om det så er ridning, han har brug for, så vil
Children with Down’s syndrome are like
to get, and you have gained another who you
vi bakke op om det.
everyone else, sometime happy and some-
must learn to accept”. In the first few days we
times not. They can also be really stubborn
tried to get an overview of the catastrophe.
and temperamental.
What about when he becomes an adult?
stare at – with pudding basin hair, corduroy
trousers and thick lens glasses.
mig til hver gang, vi skal mødes.
they really can do. I look forward to it each
I think it was so extremely unjust that I had a
Tør jeg håbe, han dør under operationen?
Det
Psykologen opdagede, at vi begge havde haft
er da godt, at mongo-
et håb om, at Christian døde – og vi fandt ud
ler er så glade. Sikke en
Hun skal bare altid være supersmart i tøjet.
What is he going to do? Where is he going to
Nu får jeg et grimt barn, som alle vil glo på –
live?
med kasserollehår, fløjlsbukser og hinkestene.
af, at det er helt normalt i denne situation.
omgang vås. Mongoler er som
Psykologen udtrykte det, vi følte således. “I har
alle andre glade indimellem.
mistet det barn, I ventede at få og I har fået et
Men de kan altså også være
andet barn, som I først skal tage til jer nu”.
stædige og temperamentsfulde.
child with Down’s syndrome. The only thing
Skal jeg nu have et hjemmeboende barn altid?
I de første dage forsøgte vi at få overblik over
Just think how people in the street will stare
I wanted to do was scream. At the same time
Tænk, hvor folk vil glo efter mig, når jeg går
katastrofen. Hvad når han bliver voksen? Hvad
at me when I am out with him.
I hoped she would die. It was frightening.
med ham på gaden.
skal han lave? Hvor kan han bo?
· 14
15
·
· 16
How we are today
Sådan har vi det i dag
Marcus 2 år
Marcus er født i marts 2000 på Roskilde
Amts Sygehus. Ved fødslen vejede han 3170
Nanna three years and 9 months
g og var 50 cm lang. Vi har været så utrolig
Nanna is a happy and active girl with a strong
television programme. Nanna is unfortu-
had any complications. Marcus is our first
heldige, at Marcus indtil nu ikke har haft
will and an affectionate nature. She commu-
nately an only child, but is gradually begin-
born so the attention around him was quite
nogle følgesygdomme. Marcus er den første
nicates both with signs and short sentences.
ning to form relations with other children
intense to begin with, which he enjoyed and
Nanna tre år og 9 mdr.
She is doing fine in her kindergarten, where
with and without Down’s syndrome. She is a
still enjoys to the full. He is an amazingly
Nanna er en glad og aktiv pige med en stærk
Svømning er også sjovt! Der bruges megen
været ret stor fra starten, hvilket han har nydt
there are some extra resources. She is fond
little live wire who we wouldn’t be without!
happy little charmer who just slogs on and
vilje og et kærligt væsen. Hun kommunikerer
tid på “læsning” i bøger og madlavning ved
og stadig nyder i fulde drag. Han er en helt
of singing, dancing and music, and sings
Mother 38 and father 40 at birth.
runs everybody off their feet. He is not so
både med tegn og kan sige små korte sæt-
legekomfuret, og Nannas utallige sovedyr bli-
utrolig glad, lille charmetrold, der bare okser
along with enthusiasm to the last word of the
wild about crawling as yet, but pushes him-
ninger. Hun trives godt i sin børnehave, som
ver passet og puttet. “Bamse og Kylling” er
derudaf og tager alle med storm. Han er
lyrics. She loves doing “gymnastics” and is
self around at full speed – so why be trou-
er en almindelig institution med en basis-
absolut favoritfjernsyn.
endnu ikke vild for at kravle, men møver sig i
fødte, så opmærksomheden om ham har
learning to jump. Swimming is also fun! A lot
Marcus two years
bled about learning to crawl? He gets up with
gruppe, hvor der er lidt ekstra resurser. Hun
Nanna er desværre enebarn, men begynder
fuld fart rundt – så hvorfor besvære sig med
of time is used on “reading” books and cook-
Marcus was born in March 2000 at Roskilde
the help of anything to hand and loves walk-
er glad for sang, dans og musik og forsøger
så småt at skabe relationer til andre børn
at lære at kravle. Han rejser sig op af alt,
ing on her toy stove, and Nanna loves her
County Hospital. At birth he weighed 3.17 ki-
ing when you hold him by his hands.
gerne med begejstring at synge med på sid-
med og uden Downs syndrom. Hun er et lille
hvad han kan komme i nærheden af og elsker
countless cuddly toys. “Bamse og Kylling”
los and was 50 cm long. We have been
Mother 23 and father 26 at birth.
ste ord i hver sætning. Hun elsker at lave
livstykke, vi ikke ville være foruden!
at gå, når man holder ham i hænderne.
(Bear and Chicken) is her absolute favourite
amazingly lucky that Marcus has so far not
“gymnastik” og er ved at øve sig i at hoppe.
Mor 38 og far 40 år ved fødslen.
Mor 23 og far 26 år ved fødslen.
· 18
19
·
I dag bruger Saga ca. 40 tegn og er så småt
begyndt at sætte to tegn sammen. Hun har
et verbalt sprog på fire ord og en masse lyde.
Hendes yndlings beskæftigelse er at lege
Max 10 months
med dukker og bamser, lege køkken, klæde
Max 10 mdr.
Saga is an active girl with mosaic Down’s syn-
high chairs and kitchen benches and running
Max is a boy with a lovely temperament,
sig ud, “læse” bøger, danse, høre musik,
Max er en dreng med et dejligt temperament,
drome. She is trusting and always happy, ex-
as fast as she can. She has just become a big
which currently expresses itself when he is
synge, rutsche, kravle op på høje stole og
som lige for øjeblikket kommer til udtryk, når
cept when her parents scold her or do some-
sister and that happened beyond all expecta-
laid down. By preference he wants to sit up
køkkenbænke og løbe så hurtigt hun kan.
han bliver lagt ned. Han vil allerhelst sidde
thing she does not want. Then she gets stub-
tions. There has been no jealousy so far – we
(he has just learned to sit without support), or
Hun er lige blevet storesøster, og det er gået
op (han har netop lært at sidde uden støtte),
born, like all two-year-old children. She is the
wonder how long it will last!
walk with his mother or father in a baby sling
over alle forventninger. Der er ingen jalousi
eller gå med mor og far rundt i bæresele og
biggest charmer that ever was, and well
Mother 29 and father 31at the birth.
and experience the big wide world. Max has
Saga 2 år
indtil videre – hvor længe mon det holder!
opleve den store verden.
always been amazingly present and loves to
Saga er en aktiv pige, som har mosaik Downs
Mor 29 og far 31 år ved fødslen.
Max har altid været utrolig nærværende og
Saga 2 years
aware of the fact. Her development is more
be entertained with songs and play. He had
syndrom. Hun er tillidsfuld og er altid glad,
elsker, når der synges og spilles for ham.
guage. We started using Sign-For-Speech
tion where normal speaking language is supple-
an operation for a heart condition when he
undtagen når hendes forældre skælder
Han blev opereret for en hjertefejl, da han
early on, and she used her first sign – music
mented with signs which are often borrowed
was three and a half months old and may
hende ud, eller gør noget, hun ikke vil have.
Tegn-Til-Tale er en kommunikationsform, hvor
var tre en halv måned gammel og skal mulig-
– just before her first birthday. Today Saga
from deaf sign language. It is only the meaning
possibly need another operation later on. In
Så gør hun modstand som alle andre to-
det almindelige talesprog suppleres med tegn,
vis opereres igen senere. På trods af sin hjerte-
uses about 40 signs and has begun putting
carrying words in a sentence which are sup-
spite of his heart condition he has always had
årige. Hun er den største charmetrold, der
som ofte er lånt fra døves tegnsprog. Det er kun
fejl har han altid haft viljen og styrken til at
two signs together. She has a verbal language
ported by signs.
the will and the strength to learn and explore,
findes og er udmærket godt klar over det
de betydningsbærende ord i en sætning, som
lære og udforske, og det er en stor del af
understøttes af tegn.
Max’ personlighed.
or less “normal”; the biggest delay is her lan-
Sign-For-Speech is a form of communica-
and that is a big part of Max’s personality. He
selv. Hun følger stadig mere eller mindre den
favourite occupation is playing with dolls and
of the child’s language. Many parents start to
is still being breast-fed, but from the age four
“normale” udvikling, hendes største forsin-
teddy bears, playing at cooking, dressing up,
learn Sign-For-Speech when the child is around
months he has been spoon fed and drinks
kelse er sproget. Vi begyndte at bruge Tegn-
sprog. Mange forældre begynder at lære Tegn-
fire mdr. fået skemad og drukket af kop med
“reading” books, dancing, listening to music,
one year. You can read more about Sign-For-
from a cup with great pleasure.
Til-Tale tidligt, og hun brugte sit første tegn –
Til-Tale, når barnet er ca. et år. Du kan læse mere
stor fornøjelse.
singing, playing on the slide, crawling up on
Speech in “På vej” (see the reading list).
Mother 32 and father 34 at the birth.
musik, lige inden hendes et-års fødselsdag.
om Tegn-Til-Tale i “På vej” (se litteraturlisten).
Mor 32 og far 34 år ved fødslen.
of four words and a lot of sounds. Her
· 20
Sign-For-Speech promotes the development
Tegn-Til-Tale fremmer udviklingen af barnets
Max bliver stadig ammet, men har fra han var
21
·
Lina 7 år
Vi er en familie på snart fem personer (Lina
får snart en lillebror mere) og bosat de sidste
11 år i Levring. Lina blev født med en lille
hjertefejl, som hun blev opereret for, da hun
Esther Mathilde 19 months
var 10 mdr. Og det gik helt fint.
Esther Mathilde is our first child and is idol-
soft ice cream, tomatoes and milk pudding
It all went well. She started in “normal” day
Hun kom i “normal” dagpleje, da hun var
ized by the entire family – especially by her
are amongst her favourites. Broccoli and po-
care when she was two years old, and then
to år og startede i en specialbørnehave, da
father, maternal grandfather and paternal
tatoes are not. Esther has been spared ill-
progressed to a special kindergarten when
hun blev tre år.
grandfather. She is a real little charmer who
nesses, except for one case of ear inflamma-
she was three. Lina could walk by herself at
Esther Mathilde 19 mdr.
knows how to get her own way. Esther is in
tion in connection with teething. In the photo
that age. She still needs a nappy, but has
Esther Mathilde er det første barn, og hun bli-
maven til at komme op på knæ og kravle.
stadig i bleen, men er begyndt at være renlig.
day nursery together with her friend Anna
Esther is on the beach with her grandparents
started learning to use the toilet. She gets a
ver forgudet af hele familien – særligt af sin
Derudover vil hun meget gerne op at stå, ikke
Hun får lidt hjælp til spisning og hjælp til
and develops a lot by reflecting herself in the
who love looking after her.
bit of help with eating, dressing and undress-
far, morfar og farfar. Hun er en rigtig lille
mindst for at få lov at pille ved det, der ligger
af- og påklædning.
other children. She has some relatively soft
Mother 32 and father 30 at the birth.
ing. When she was five she started in a spe-
charmør, der forstår at få tingene, som hun
på bordet. Hakkedrenge med bløde løg, soft-
Som fem-årig startede hun i en specialskole
cial school and has since achieved consider-
gerne vil have dem. Esther går i vuggestue
ice, tomater og koldskål er blandt favoritterne.
og har siden haft en stor sproglig udvikling
joints which impede her coarse muscular ac-
Lina kunne gå selv som tre-årig. Hun tisser
able linguistic development combined with
sammen med sin veninde Anna og udvikler
Broccoli og kartofler er ikke. Esther har været
kombineret med Tegn-Til-Tale.
constantly spur her on to new adventures.
Lina 7 years
Sign-For-Speech. Lina is an amazingly affec-
sig meget af at spejle sig i de andre børn i
forskånet for sygdomme, bortset fra en enkelt
Lina er en utrolig kærlig og positiv pige, og
She has recently started the transition from
We are a family of four going on five (Lina
tionate and positive girl; she is also a bit stub-
institutionen. Hun har nogle forholdsvis bløde
mellemørebetændelse i forbindelse, med, at
så er hun lidt stædig og har en trang til at gå
crawling on her stomach to crawling on her
will soon get another little brother) and have
born and has a desire to go walkabout, so
led, der hæmmer hendes grovmotorik, men
hun fik tænder. På billedet er Esther på stran-
på opdagelse, så man skal altid lige have et
knees. She would very much like to stand up,
lived for the last 11 years in Levring. Lina was
you always need to keep an extra eye on her.
hendes nysgerrighed og stædighed driver
den med mormor og morfar, som hun elsker
ekstra øje på hende.
especially to be able to explore what is lying
born with a minor heart condition which was
Mother 26 and father 31at the birth.
hende hele tiden på nye eventyr. Hun er for
at blive passet af.
Mor 26 og far 31 år ved fødslen.
on the table. Hamburgers with soft onions,
operated on when she was 10 months old.
nylig begyndt at skifte fra at krybe af sted på
Mor 32 og far 30 år ved fødslen.
tivity, but her curiosity and stubbornness
· 22
23
·
Freja 2 år
Vincent 6 weeks
Freja 2 years
Vincent is the first born of twins, and is thus
Freja was born at Næstved Hospital in a very
kindergarten (she is collected and brought
ganske normal fødsel og efter en helt normal
big brother to Nikita. They were born prema-
normal birth after a full and normal preg-
home by bus every day), that she was very
graviditet. Ca. 10 min. efter fødslen sagde
turely, and having Down’s syndrome he was
nancy. About 10 minutes after the birth the
fond of attending.
vores jordemoder, at hun havde en mistanke
Hun kunne sidde selv, da hun var otte/ni mdr.
much smaller than his sister. He was born in
midwife said that she suspected Freja had
She could sit unassisted at nine months,
Vincent 6 uger
om, at Freja var født med Downs Syndrom.
Da hun var et år kunne hun gå “bjørnegang/
week 32 and weighed 1.3 kilos. Today, six
Down’s Syndrome. She had all the signs: the
"bear walk" on all fours at one year, and walk
Vincent er den første af et tvillingepar, dvs.
Hun havde alle symptomer: Firefingerfure,
abegang” (strakte ben + hænder) og 20 mdr.
weeks later, he weighs 2.7 kilos. He can
single deep crease across the palm, sandal
upright by herself at 20 months. She is one
storebror til Nikita. De er født for tidligt, og
sandalfod, lavtsiddende ører, skæve øjne,
gammel kunne hun gå selv. Så, ja det er en
breast-feed a little but because that tires him,
foot (unusually wide space between the large
lady who is full of go. Freja is an amazingly
som mongol var han meget mindre end
ekstra nakkefold m.v. – kort sagt alt, dog uden
dame med fart på.
he gets expressed breast milk in a feeding
and second toe - Ed), low set ears, character-
happy girl – whether it’s five in the morning
søsteren. Han er født i 32. uge og vejede
tegn på nogle følgesygdomme. Heldigvis.
Freja er en utrolig glad pige – uanset om klok-
bottle. Vincent was born without any heart
istic slant to the eyes, extra neck fold etc. – in
or it eight in the evening. She is very ener-
1265 gram.
Freja er vores lille/store solstråle! Vi elsker
ken er fem om morgenen, eller den er otte
condition. He really enjoys life; he eats,
short everything. But fortunately without any
getic and incredibly persistent, when there is
I dag, seks uger efter, vejer han 2700 gram.
hende alle overalt på jorden og ville ikke
om aftenen. Hun er meget energisk og utrolig
sleeps and wants lots of contact when he is
signs of complications. Freja is our ray of
something she would like. Besides that she is
Han kan die lidt, men fordi han bliver meget
bytte hende væk for en million. Det, at VI fik
påholdende, når der er noget, hun gerne vil.
awake.
sunshine! We love her to bits and would not
very affectionate and benefits from having
anstrengt, får han modermælk (som jeg
et barn med Downs, tog vi som en udfordring
Desuden er hun meget kærlig og nyder godt
Mother 32 and father 26 at the birth.
swap her for anything. The fact that WE got a
both a big brother and a big sister who are
malker ud) i sutteflaske.
– der måtte jo være en mening med det!
af at have både en storebror og en storesøs-
child with Down’s syndrome, we took as a
both very fond of playing with her. We use
Vincent er født uden hjertefejl. Han er en
Freja har udviklet sig i rivende hast. Hun kom
ter, som meget gerne vil lege med hende.
challenge – there had to be a meaning to it!
Sign-For-Speech, and the first words are grad-
rigtig livsnyder, han spiser, sover og har et
10 mdr. gammel i specialbørnehave (hun bli-
Vi bruger Tegn-Til-Tale, og de første ord er
Freja has developed at terrific speed.
ually on their way.
stort behov for kontakt, når han er vågen.
ver hentet og bragt i bus hver dag), hvor hun
så småt på vej.
At 10 months old she started in a special
Mother 36 and father 33 at the birth.
Mor 32 og far 26 år ved fødslen.
er meget glad for at være.
Mor 36 og far 33 år ved fødslen.
· 24
Freja blev født på Næstved Sygehus ved en
25
·
Marie 12 år
Marie er en pige med masser af lyst til livet
og sine meningers mod. Hun går i skole på
femte år, og er meget glad for de udfordringer,
Anders 1 year and 7 months
det giver hende. Det er en fornøjelse at følge
Anders was born in August 2000 by cae-
“mother”, “stop”, “hi”, “no”, “sleep” as well as
her development both physically and intel-
hendes udvikling både fysisk og intellektuelt.
sarean section and has had a difficult start in
Arabic words (Anders’ parents are from
lectually. A development which is not quite
Den udvikling, der ikke er helt som andre
life. It turned out that he had two holes in his
Jordan – Ed). He can stand up by himself and
like other children’s but still has a flow. The
heart and one hour after learning this, we
walk if you hold his hand. We are very fond
school is very important to Marie. It gives her
Anders 1 år og 7 mdr.
være taknemmelige for stewardessens store
Skolen er meget vigtig for Marie. Den giver
were told that he possibly had Down’s syn-
of Anders. Just as we were sad when we were
day a pattern, and it is here that she meets
Anders er født i august 2000 ved kejsersnit.
indsats.
hendes dag et mønster og samtidig er det her
drome. It was very tough. Anders has had
told that he had Down’s syndrome and a
her friends. Marie is a big arranger of social
Han har haft en svær start på livet. Det viste
Nu er Anders en meget frisk dreng. Han er
hun møder kammerater. Marie er “stor-arran-
long stays in the hospital with heart opera-
heart condition, we are equally glad to have
events and if it was up to her, we would have
sig, at han havde to huller i hjertet, og en
halvandet år gammel og meget dygtig. Han
gør” af sociale arrangementer og stod det til
tions and getting a pacemaker before he was
him now, and would not swap him for ten
something arranged every day. She handles
time efter fik vi at vide, at han måske var
har mange ord som “mor”, “stop”, “hej”, “nej”,
hende, skulle vi have aftaler hver dag. Hun
three months. The worst experience for him
“normal" children.
the telephone calls by herself and makes
mongol (Downs syndrom). Det var meget
“sove” samt arabiske ord. Han kan stå selv og
klarer selv telefonopringninger og diverse
was in May 2001 when we were on our way
Mother 31 and father 39 at the birth.
agreements which are then checked with the
hårdt. Anders har haft lange ophold på syge-
gå, hvis man holder ham i hånden.
aftaler, som så bliver checket med de voksne.
home from summer holiday. Suddenly he
grown-ups. In our family we are in a way
huset med hjerteoperationer og indlæggelse
Vi er meget glade for Anders. Lige så kede af
I vores familie er vi sådan set tre voksne,
stopped breathing up in the airplane. He re-
three adults, because Marie’s big sister is 17
af pacemaker, før han fyldte tre mdr.
det vi var, da vi fik at vide, han var mongol
fordi Maries storesøster er 17 år. Det har hele
børns, men alligevel har et flow.
ceived first aid from the cabin crew until we
Marie 12 years
years old. It has given Marie great advan-
Den værste oplevelse for ham var i maj 2001,
med hjertefejl, lige så glade er vi for ham nu,
Maries liv givet hende store fordele. Hun har
landed in Turkey. We will always be grateful
Marie is a girl with a lust for life and the
tages all through her life. She has always
da vi var på vej hjem fra sommerferie.
og vi vil ikke bytte ham med ti andre “normale
altid haft en plads i rækken hos storesøste-
to the cabin crew’s heroic efforts. Now
courage of her convictions. She is in her fifth
been included with her big sister’s friends
Pludselig holdt han op med at trække vejret
børn”.
rens veninder og venner, og det har hun lært
Anders is a very fit and able boy of eighteen
year at school and is very fond of the chal-
and she has learnt a lot from that.
oppe i flyet. Han fik førstehjælp af en stewar-
Anders forældre er fra Jordan.
meget af.
months. He can say many words like
lenges it gives her. It is a pleasure to follow
Mother 32 and father 32 years at the birth.
desse, indtil vi landede i Tyrkiet. Vi vil altid
Mor 31 og far 39 år ved fødslen.
Mor 32 og far 32 år ved fødslen.
· 26
27
·
Jonas 12 år
Christian 10 years
Jonas 12 years
Jonas går på Storå-skolen i Holstebro. Han har
Shortly after an otherwise normal birth we
teacher. Today he attends a special school.
Jonas attends Storå School in Holstebro. He
Christian 10 år
were told that Christian had Down’s syn-
He plays football in a newly founded football
has a little brother of ten and a little sister of
Kort tid efter en ellers normal fødsel fik vi
i almindelig børnehave med støttepædagog.
Hans sprog er endnu lidt uforståeligt, men
drome. In addition he had a minor heart con-
club for individuals who are development
seven. His language is still rather incompre-
at vide, at Christian havde Downs syndrom.
I dag går han i specialskole. Han spiller fod-
det bliver bedre og bedre. Nu kan han skrive
dition which resolved by itself when he was
compromised. Christian loves to cycle and
hensible but it gets better all the time. Now he
Han havde desuden en lille hjertefejl, som
bold i en nystartet fodboldklub for udviklings-
sit navn, og han kender tallene op til 10. Han
around one year old. When we got Christian,
play computer games. He also has a good
can write his name and knows the numbers up
voksede sammen omkring et-års alderen.
hæmmede. Christian elsker at cykle og spille
spiser også med kniv og gaffel og går selv i
we had already had a two year old boy with
friend with whom he plays a lot and they al-
to 10. He also eats with a knife and fork, takes
Da vi fik Christian, havde vi allerede igennem
på computer. Han har også en god ven, som
bad, cykler uden støttehjul og løber på løbe-
Down’s syndrome. So we knew what it was
ternate with sleeping at each other’s homes.
showers, cycles without a support wheel and
to år haft en dreng med Downs syndrom i
han leger meget med og de skiftes til at sove
hjul, ja faktisk er han næsten selvhjulpen
about, and that it was not the worst thing that
Christian is a well-functioning boy and so
uses a scooter. Actually he is self-reliant with
aflastning. Så vi vidste godt, hvad det drejede
hos hinanden.
med alt.
could happen. Christian could sit unassisted
life-affirming that we have not regretted de-
just about everything. Jonas has a great sense
sig om, og at det ikke var det værste, der
Christian er en velfungerende dreng, han er
Jonas har en fantastisk humor og elsker at lave
when he was eight months old, crawled at 10
clining the amniocentesis in connection with
of humour and loves making fun. He loves or-
kunne ske.
så livsbekræftende, at vi ikke har fortrudt, at
sjov. Han har ordenssans og holder sjovt nok
months and walked when he was 17 months.
our age.
derliness and enjoys tidying up, especially for
Christian sad selv ca. syv-otte mdr. gammel,
vi fravalgte fostervandsprøve, selvom vi
meget af at rydde op (især for andre). Han
He learned to use the toilet by the age of
Mother 38 and father 39 years at the birth.
en lillebror på 10 og en lillesøster på syv år.
others. He is a busy user of PlayStation, com-
kravlede da han var 10 mdr. og gik, da han
havde alderen.
er flittig bruger af PlayStation, computer og
four, and has been in day-care and an ordi-
puter and video films.
var 16-17 mdr. Han var renlig ved fire-års
Mor 38 og far 39 år ved fødslen.
videofilm.
nary kindergarten with an assistant nursery
Mother 28 and father 28 years at the birth.
alderen, og han har været i dagpleje og gået
· 28
Mor 28 og far 28 år ved fødslen.
29
·
H e a v e n ’s v e r y s p e c i a l c h i l d
At bære
Af ukendt engelsk forfatter
A meeting was held quite far from Earth!
So let’s be careful where he’s sent,
Jeg har hørt, at der findes en gammel legende,
It’s time again for another birth.
We want his life to be content.
om hvad der oppe i himlen hændte.
Said the Angels to the LORD above,
Please LORD, find the parents who
Den siger, at engang den kære Gud,
This Special Child will need much love.
Will do a special job for you.
sagde til englene, vil I gå bud?
Der et barn som skal fødes på jord,
His progress may be very slow,
They will not realize right away
vil I prøve at finde en far og mor,
Accomplishments he may not show.
The leading role they’re asked to play,
som vil elske og pleje dets krop og dets sjæl,
And he’ll require extra care
But with this child sent from above
det er netop en opgave helt speciel.
From the folks he meets down there.
Comes stronger faith and richer love.
Barnet er svagt, det har handicap med,
He may not run or laugh or play,
And soon they’ll know the privilege given
by Edna Massionilla
I ved, at jeg elsker alt svagt og småt,
His thoughts may seem quite far away,
In caring for their gift from Heaven.
December 1981
og jeg ønsker, at barnet skal få det godt,
In many ways he won’t adapt,
Their precious charge, so meek and mild,
The Optomist-newsletter for PROUD Parents
så de to, der bliver dets far og mor,
And he’ll be known as handicapped.
Is HEAVEN’S VERY SPECIAL CHILD.
Regional Outreach for Understanding Down’s Inc.
må virke som mine hænder på jord.
så det kræver meget tålmodighed.
Måske vil de først have svært ved at se,
at der kan være en mening med det,
at barnet ikke kan tumle og lege,
og at det kræver så megen pleje.
Men de vil nok efterhånden lære,
at det giver kræfter at måtte bære.
Guds kærtegn gør undertiden ondt,
og medgang alene er ikke sundt,
men modtager de barnet, som gave de to,
så bliver det en kilde til indsigt og tro,
og så kan det sikkert med tiden læres,
at livet er både at bære – og bæres.
· 30
31
·
The many helpers
De mange hjælpere
When a child is born with Down’s syndrome,
The physiotherapist is one of the first health-
the leaflet “På vej” from National Down’s
Når du har født et barn med Downs syndrom,
med andre forældre til små børn med Downs
du rekvirere pjecen “På vej” hos Landsfore-
the midwife/doctor has a legal duty to report
care professionals you will meet, because
Syndrome Association, (see the reading list).
har jordemoderen/lægen indberetningspligt.
syndrom.
ningen Downs syndrom (se litteraturlisten).
it. This means that, with your knowledge, they
muscle weakness is one of the common fea-
There are many parents who, after the first
Det betyder, at de med dit vidende har pligt
will inform the social services department in
tures of children with Down’s syndrome.
year of the child’s life say: “Our home is get-
til at underrette socialforvaltningen i din
Fysioterapeuten er ofte en af de fagpersoner,
ste halve til hele år af barnets levetid siger:
your municipality that a child with Down’s
Besides direct work with the child, the phys-
ting like a railway station” and possibly think
kommune om, at der er født et barn med
du vil møde først, da svage muskler er et af
“Vores hjem er blevet en banegård” (og
syndrome has been born.
iotherapist also advises on what you can do
to themselves “And I am taking the next train
Downs syndrom.
de gennemgående træk ved børn med Downs
måske tænker man også “… og jeg tager det
to strengthen your child’s coarse muscular
out of here”. A good piece of advice is: All the
syndrom. Fysioterapeuten kan dels selv træne
næste tog væk”.) Et godt råd er: Alle hjælpere
activity.
helpers are there for you and your child. If
Ret hurtigt efter hjemkomsten kan du forvente
barnet, dels give ideer til hvad du kan gøre for
er til for dig og dit barn. Hvis den hjælp, de
the help they offer does not suit you, then
at blive kontaktet af en sagsbehandler.
at styrke dit barn grovmotorisk.
tilbyder, ikke passer til jer, så bed dem om at
Soon after returning home you can expect to
be contacted by a case officer who can advise
Der er mange forældre, der efter det før-
you about the help and support opportunities
The speech therapist usually comes into the
you can ask them to propose something else.
Hun/han kan fortælle om, hvilke muligheder,
available for you and your family. These do
picture later on. Many children with Down’s
If you think they visit too often, or there are
der er for hjælp og støtte til dig og din familie.
Talepædagogen kommer ofte lidt senere
sionelle kommer for tit, eller de er for mange,
vary depending on the municipality in which
syndrome have difficulty in developing lan-
too many of them, then ask for a break. You
Det er forskelligt alt efter, hvor man bor, hvilke
ind i billedet. Mange børn med Downs syn-
så sig fra. Bed om en pause. I har altid et valg,
you live. Support can include extended con-
guage and the speech therapist can advise
always have a choice, and you don’t have to
støttemuligheder man får tilbudt. En del af
drom har problemer med at udvikle sproget,
man behøver ikke sige ja til alt, også selv om
tact with a health visitor, contact with a pae-
you on helping the child’s language on its way.
say yes to everything, even though everything
støtten kan være udvidet kontakt til sundheds-
og her kan talepædagogen vejlede i, hvordan
det er ment som en hjælp.
diatric specialist, physiotherapist and speech
Sign-For-Speech is an indispensable part of
is intended to be a help.
plejersken, kontakt til en hjemmevejleder/små-
man hjælper sproget på vej. Blandt andet er
therapist and extra doctor visits.
life for most children with Down’s syndrome.
børnskonsulent fra amtet, en fysioterapeut,
“Tegn-Til-Tale” en uundværlig del af livet for
talepædagog, ekstra lægebesøg mm.
de fleste børn med Downs syndrom.
foreslå noget andet. Hvis I synes, de profes-
The paediatric specialist’s task is to give guid-
At this moment it might seem overwhelming
ance and advice on how you and your closest
to think about all the professionals who can
Småbørnskonsulentens opgave er at vejlede
Lige nu er det måske overvældende at fore-
relatives can assist the child’s development.
talk to you about your child, and what you
og rådgive i, hvordan du og dine nærmeste
stille sig alle mulige professionelle, der kom-
Guidance can also later be given to the person-
can do to give the child the best possible
kan hjælpe barnets udvikling på vej. De kan
mer og taler om dit barn, og hvad du skal gøre
nel at the child’s institution. The specialist may
start in life. When and if you want more infor-
senere vejlede personalet i barnets institution.
for at give det en bedst mulig start. Når og
also be able to put you in touch with other par-
mation about the child’s development and
Nogle steder tilbyder hjemmevejlederen/
hvis du ønsker mere information om barnets
ents of small children with Down’s syndrome.
the possible help available, you can request
småbørnskonsulenten at bringe jer sammen
udvikling, og hvilken hjælp man kan få, kan
· 32
33
·
Moving ahead
Hvordan kommer man videre ?
by Bodil Keiding
Af Bodil Keiding
Loss and trauma therapist, Roskilde County Council
Tab- og traumeterapeut i Roskilde Amt
Expecting a child
you have lost, that you find the seeds of joy
themselves into work. Differences in reactions
At vente et barn
I denne situation kan det opleves som forbudt
Kvinder har ofte lettere ved at sætte ord på
Expecting a child is for most parents a time
in what you have gained. By coming to terms
do not need to provoke accusations that one
At vente et barn er for de fleste forældre for-
at sørge, men det er en ganske naturlig følelse,
deres følelser og græde end mænd. Mange
of joy, expectations and dreams. Usually the
with and acknowledging your sorrow, you can
is running away while the other is drowning
bundet med glæde, forventninger og drømme.
når man har oplevet et tab af det raske barn.
mænd er mere handlingsorienterede; de
dreams about the child are positive, “It will
begin to feel joy about the positive aspects.
in sorrow, but there is a danger of misunder-
Som regel er drømmene om barnet positive.
Her er det vigtigt at huske, at det er i sorgen
ordner praktiske ting, søger informationer
standings. The important point is that differ-
“Det vil blive sundt og rask”, og man håber, at
over det, man har mistet, man finder kimen
om Downs syndrom eller fordyber sig f.eks.
man bliver lykkelig i sin familie.
til glæden over det, man har. Dvs. at ved at
i arbejde.
be a perfectly healthy baby”. You have been
looking forward to the birth, so naturally it
Different reactions
ences rarely – or never – express “indifference”.
comes as a big shock to be told that the new
There are many ways to react when you have
We all do the best we can, right here and
arrival has Down’s syndrome, a different child
a child with Down’s syndrome. Some lose
now. You and your closest relatives have to
chok at få at vide, at den lille ny har Downs
in many respects from the child you were prob-
control of their emotions, for example crying
find out about having and living with a child
syndrom.
ably dreaming about. The new situation is so
without provocation or becoming angry with-
who has Down’s syndrome.
Barnet afviger måske på mange punkter fra
Forskellige reaktioner
sorg, men der er en fare for misforståelser.
unexpected and makes so different demands
out reason, or do strange things. Some become
det barn, man drømte om.
Der er mange måder at reagere på, når man
Det vigtigste er, at forskelle sjældent – eller
that many despair. “Why me?” “Why us?”
forgetful and anxious. The opposite can also
Having a child with Down’s syndrome
får et barn med Downs syndrom. Man kan
aldrig – er udtryk for “ligegyldighed”. Man må
happen; closing off, throwing yourself into
is a many-sided experience
så anderledes krav, at mange, men ikke alle, i
godt for en tid miste kontrollen over sig selv.
regne med, at vi hver især gør vores bedste,
A mixed cocktail of feelings
work or domestic practicalities, anything to
On the one hand you might experience defeat
første omgang bliver fortvivlede. “Hvorfor lige
F.eks. kan man helt umotiveret begynde at
så godt vi kan lige nu.
Most parents are very confused because they
occupy the mind and shut out feelings. There
or dashed hopes, while on the other you are
mig?”. “Hvorfor lige os?”
græde, blive vred uden grund, foretage sig
feel both powerless and joyful over the new
is often a difference between the reactions of
filled with joy over even the slightest progress
underlige ting. Blive glemsom og angst. Der
finde ud af at have fået og leve med et barn
baby. You are unhappy that it is not the healthy
men and women, especially in stressed situa-
that the child makes. Parents of older children
En cocktail af følelser
kan også ske det modsatte; at man lukker af,
med Downs syndrom.
child you dreamed of, but at the same time
tions. When you are under pressure it is easier
with Down’s syndrome express it this way:
De fleste forældre er meget forvirrede, fordi
kaster sig over alt det praktiske, fordyber sig
happy for the child you have got. It can be
to misinterpret the other person’s reactions as
“You can say that we have received a present.
de både føler afmagt og glæde over den lille
i arbejde, ja, gør alt for ikke at mærke.
difficult to handle these mixed feelings. In this
rejection and indifference. It is often easier
We have greater intensity in our life, and
ny. Man er på en gang ulykkelig over, at det
situation, grieving can be regarded as taboo,
for women to vocalise their feelings and cry
have become better at living in the present,
ikke er det raske barn, man drømte om, og
reaktioner. Især i stressede situationer. Og
På den ene side oplever man måske nederlag
but in fact it is a very natural feeling when you
than it is for men. Many men are more action
because we know that nothing in life is ever
samtidig lykkelig og glad for det barn man har
når man er presset, har man lettere ved at
eller skuffede forventninger, på den anden
feel you have lost a healthy child. It is impor-
oriented. They take care of practicalities, seek
certain”.
fået. Det kan være svært at håndtere denne
misforstå den andens reaktioner som afvisning
side fyldes man af glæde over selv små frem-
tant to remember that it is in grieving for what
information about Down’s syndrome or throw
blanding af følelser.
eller ligegyldighed.
skridt, barnet gør.
· 34
Derfor kan det naturligvis være et stort
Den nye situation er så uventet og stiller
bearbejde og erkende sin sorg, kommer man
til at glæde sig over de positive sider.
Forskelle i reaktioner behøver ikke at
give anledning til beskyldninger om f.eks. at
den ene flygter og den anden begraver sig i
Ofte er der forskel på mænd og kvinders
Du og dine nærmeste skal sammen til at
Det at få et barn med Downs syndrom
er mangesidet
35
·
Where can you get help?
Forældre til lidt større børn med Downs syn-
If you need professional help to make
drom, udtrykker det således: “Man kan sige,
progress, you have the opportunity to be
vi har fået en gave. Vi har fået større intensitet
referred to a psychologist through your GP
i vores liv, er blevet bedre til at leve her og nu,
or the hospital where the child is born. This
for vi ved, at der ikke er noget, der er givet”.
offer is widespread and has helped many to
come to terms with their feelings and to talk
Hvor kan du henvende dig?
about how the family can move ahead. You
Hvis du har brug for professionel hjælp til at
can also talk to the case officer who can
komme videre, har du mulighed for at blive
advise you on the range of help available in
henvist til psykolog gennem egen læge eller
the county or municipality.
det hospital, hvor barnet er født. Dette tilbud
er almindeligt udbredt og har hjulpet mange
til at bearbejde deres følelser og få talt om,
hvordan familien skal komme videre.
Du kan også henvende dig til sagsbehandleren, som kan henvise til amtets og kommunens tilbud.
· 36
37
·
My older brother is handicapped
Min bror er handicappet
By Dan R. Schimmell
Af Dan R. Schimmell
Consultant with The LEV National Association
Konsulent i landsforeningen LEV
I am the younger brother of a now very grown
Three things especially are etched on my
“You should be grateful”
Jeg er bror til en nu meget voksen mand, der
• Forældremøder
over for hinanden, og jeg sad over for min bror.
up man who is development compromised. He
memory:
When we had meals in the kitchen, my par-
er udviklingshæmmet. Han er min storebror
• “Du skal være glad for, at du ikke har det
Jeg kunne ikke undgå at se min bror smaske
is my big brother and so naturally I have never
• Parents’ meetings
ents would sit opposite each other, and me
og i sagens natur har jeg aldrig oplevet at have
som din bror”
sig gennem måltiderne – ret irriterende. Jeg
experienced being in a family without a handi-
• “You should be grateful that you are not
opposite my brother. I couldn’t avoid seeing
en familie uden et handicappet medlem. Jeg
• Forskellige regler
brokkede mig ved flere lejligheder over, at
my brother chewing away noisily – it was quite
synes, det på rigtig mange punkter har beriget
annoying. On several occasions I grumbled
mit liv, og givet mig et syn på mennesker, der
Forældremøder
var jeg meget vedholdende i mine krav til
about having a “ringside seat”. Sometimes I
er præget af stor tolerance.
Forældremøder på specialskolen hos min
stor irritation for mine forældre. Deres svar
capped member. I think it has enriched my life
in many ways, and given me a view of people
like your brother”
• Different rules
which is characterised by greater tolerance.
jeg skulle have “første parket”. Somme tider
Parents’ meetings
was very persistent in my demands, causing
bror var noget, der blev talt om i uger forinden.
til mig var: “Vær glad for, at du ikke har det
Many parents become anxious about living
Parents’ meetings at my brother’s special
my parents great annoyance. Their reply was
de skal til at leve med at have et handicappet
Tingene blev vendt og drejet. Argumenter blev
som din bror”, og “du skal ikke ønske dig at
with a handicapped child, especially if there
school were talked about for weeks before-
always: “You should be grateful that you are
barn, særligt hvis der er søskende. Mange
fundet, forkastet eller accepteret. Strategier
være i hans sted”. Hårde ord når man kun er
are siblings. Many of the parents I meet have
hand. Things were twisted and turned. Argu-
not like your brother”, and “you wouldn’t want
af de forældre, jeg møder, har kronisk dårlig
blev aftalt osv. Alt sammen for at være klar –
en knægt.
a very bad conscience in relation to the non-
ments were formulated, accepted or rejected.
to be in his shoes”. Hard words when you are
samvittighed i forhold til de ikke handicap-
klar til at fortælle, hvordan mine forældre gerne
handicapped siblings – often without reason.
Strategies were prepared and agreed – what
just a boy.
pede søskende – ofte uden grund.
ville have, at skoletilbudet skulle se ud for
arbejdet offensivt på at ændre min brors spise-
min bror. Altid skulle både far og mor af sted.
vaner, lavet omrokeringer ved bordet, i det
Mange forældre bliver bekymrede, når
Når jeg tænker tilbage på min barndom,
my parents would like the school to offer my
Kontrasten til møder, der handlede om
When I think back to my childhood, I do
brother. And both my mother and father went
I would have preferred that they had done
husker jeg ikke min bror som handicappet,
not remember my brother as handicapped.
there.
something to change my brother’s eating
jeg husker ham, som den han var og er, min
mig var slående. Ofte blev det aftalt aftenen
habits, made table rearrangements, doing
storebror. Da jeg blev ældre, kunne jeg se,
før, hvem af mine forældre der deltog – sådan
var det.
I remember him as the one he was and is, my
big brother. When I got older I could see that
The contrast to the parents’ meetings about
something to ensure that everyone was con-
der var noget ved ham, som var anderledes.
there was something about him that was differ-
me was striking. It was often agreed just the
sidered, including me.
Som stor skoledreng sammenlignede jeg,
ent. As a schoolboy I compared the things my
evening before which one of my parents
parents did and didn’t do for him and for me.
would go – that was how it was.
Different rules
Jeg ville ønske, at mine forældre havde
· 38
were still differences in the things my brother
tised things as they did instead of just doing it.
and me were allowed to do. It spelled trouble
hele taget vist ved aktive handlinger, at vi alle
skulle være der, også jeg.
Forskellige regler
Jeg havde vide rammer i mit barndomshjem,
hvilke ting mine forældre gjorde og ikke
fortalt mig, hvorfor de prioriterede, som de
men der var også forskel på, hvad vi brødre
gjorde for ham og mig.
gjorde, i stedet for bare at gøre det.
kunne tillade os. Eksempelvis har det altid
givet ballade, når jeg smed mig på gulvet –
I had a fairly unrestricted childhood, but there
I wish my parents had told me why they priori-
Jeg ville gerne have oplevet, at de havde
Der er særligt tre ting, der har brændt sig
fast i min hukommelse:
“Du er heldig”
for min bror var det til tider en virksom måde
I køkkenet, når vi spiste, sad mine forældre
at sætte sine krav igennem på.
39
·
for me if I threw myself on the floor – but for
I dag kan jeg godt se, at det var nødvendig med
my brother it was an effective means for get-
forskellige regler. Jeg ville bare ønske, at min
ting his own way.
far og mor havde fortalt, at der eksisterede
forskellige regler, og hvorfor de var der.
Today I can see that the different rules were
necessary. I just wish that my mother and father
Når jeg i voksentilværelsen kigger tilbage, så
had explained that different rules existed,
har jeg et råd til forældre i denne situation:
and why.
Giv alle jeres børn plads til at være, som
de er og til at udvikle sig. Opdragelse skal
Looking back as an adult, I can offer some
advice to parents in this situation: Give all your
children the space to be as they are, and to
develop themselves. Upbringing must be for
everybody.
· 40
også være for alle.
T h e N a t i o n a l D o w n ’s S y n d r o m e A s s o c i a t i o n
Landsforeningen Downs Syndrom
This is an association which was founded
in touch with people with Down’s syndrome
Vi er en forening, der blev stiftet i november
in November 2000. Our aim is to create the
and their families.
2000. Vores formål er at skabe de bedst mulige
best possible conditions for people with
• We publish information on Down’s syndrome
vilkår for mennesker med Downs syndrom.
• Vi udsender vores medlemsblad
Down’s syndrome.
• We publish a quarterly membership magaVi arbejder for:
• Vi afholder landsmøder med fagligt og
• extend knowledge and create understanding of people with Down’s syndrome and
their families
• at udbrede kendskab til og skabe forståelse
• We hold national meetings with a profes-
for mennesker med Downs syndrom og
sional and social content
deres familier
• We help to set up local groups and provide
Down’s syndrome and ensure that their
Membership of The National
rights are observed and developed
Down’s Syndrome Association
You can see the list of people to contact
Individuals DKK 75.00 per year
in your county on our website
Families DKK 125.00 per year
www.downssyndrom.dk, where you can
syndrome and their families
• contribute to a qualitative development
of educational and treatment services
also see our current activities and search for
Payment
socialt indhold
• Vi hjælper med at oprette lokalgrupper og
giver inspiration til eksisterende grupper.
• at repræsentere interesser for mennesker
ideas to existing groups
• represent the interests of people with
• support and guide people with Down’s
Downs syndrom
“Down&up” fire gange om året
zine “Down&Up”
We work to:
• Vi udgiver informationsmateriale om
med Downs syndrom og sikre, at deres
Medlemskab af Landsforeningen
rettigheder overholdes og udvikles
Downs Syndrom
• at støtte og vejlede mennesker med Downs
syndrom og deres familier
Enkeltperson 75,00 kr. om året
Du kan se listen over kontaktpersoner i
Familier 125,00 kr. om året
netop dit amt på vores hjemmeside
• at medvirke til en kvalitativ udvikling i de
pædagogiske og behandlingsmæssige tilbud.
information about Down’s syndrome.
www.downssyndrom.dk, hvor du også kan
Betaling
søge information om Downs syndrom og
Via P.C Bank Art 73 nr. 89139538
se vores aktuelle aktiviteter.
Via PC Bank Art 73 no 89139538
Vores forening er tilknyttet Landsforeningen
Ved overførsel til Jyske Bank kontonr.
Our association is affiliated to the LEV
By transfer to Jyske Bank account no.
LEV, hvor vi samarbejder om alle de forhold,
5073 000140950-9
National Association where we co-operate on
5073 000140950-9
der vedrører udviklingshæmmede generelt.
Husk at påføre navn, adresse og telefon-
all the conditions that concern development-
Do remember to include your name, address
compromised people in general.
and telephone number.
Hvad laver vi ?
Girokort kan bestilles på tlf.: 27 34 04 77
Giro forms can be ordered on tel. 27 34 04 77
I Landsforeningen kan du få kontakt med
eller e-mail: [email protected]
or e-mail: [email protected]ssyndrom.dk
mennesker med Downs syndrom og deres
What do we do ?
Through the National Association you can get
· 42
nummer.
familier.
43
·
Local groups or associations
In almost every county there are local groups
• collaborate on projects, for example to
D o w n s y n d r o m f o r e n i n g e n i Ve s t s j æ l l a n d s A m t
Downsyndromforeningen i Vestsjællands
Tilbud i Vestsjællands Amt
or associations which have been established
lobby the local authorities to provide shared
Amt blev stiftet i 1998 af nogle forældre til
I Vestsjællands Amt har du en række tilbud,
by parents of children with Down’s syndrome.
caring
børn med Downs syndrom. Vi er i dag 25
når du får et barn med Downs syndrom:
familier i foreningen, og vores børn er
Hjemmebesøg af en småbørnskonsulent
mellem 0 og 7 år.
Hjemmebesøg af fysioterapeut
• share ideas on how to stimulate your child
Purpose
The main purpose of a local group or association is to create a shared space where parents can help, guide and support each other
with different problems. Naturally there are
– both physically and mentally
Flere besøg af sundhedsplejerske
• increase awareness of other children’s development
• give your child equal playmates in the local
area
Aktiviteter
Vi har jævnligt legestuer forskellige steder,
f.eks. i skoven, på stranden eller i børnehaver.
Vi afholder også fælles juletræsfest, faste-
differences between local groups’ activities;
lavnsfest og en årlig sommerfest.
some have speakers and hold social events,
It is up to you and your family how active you
while others may simply meet for coffee. But
want to be in the association or group; the
all members are in the same situation – they
need is likely to vary over time. On The
for forældre og pårørende, og emnerne spæn-
all have a child with Down’s syndrome.
National Down’s Syndrome Association web-
der lige fra indlæg fra en diætist til foredrag
site www.downssyndrom.dk you can find links
om søskenderelationer og bofællesskaber.
Endvidere afholder vi forskellige foredrag
Local groups and associations provide
to local groups and associations, as well as
the opportunity to:
information about Down’s syndrome. You will
Medlemskab
• share experiences with other parents in the
also find the telephone numbers of contact
Kunne du tænke dig at være aktivt eller passivt
persons in your local area, should you have
medlem af vores forening, kan du kontakte
any questions or just need to talk to someone
Lene Pedersen på telefonnr.: 57 61 48 17,
in the same situation.
eller klik ind på vores hjemmeside
same situation
• tell each other about the help and guidance
which professionals in the local area can
www.downvestamt.subnet.dk
offer
• tell each other about the kind of options and
rights you have – especially financial rights
· 44
Use us – we are here for you!
Det koster kr. 100,- om året at være aktivt
medlem og kr. 50,- at være passivt medlem.
45
·
Useful web addresses
Nyttige web-adresser
www.downssyndrom.dk
www.ndsccenter.org
www.downssyndrom.dk
www.dsrf.co.uk
The National Down’s Syndrome Association
National Down Syndrome Congress National
Landsforeningen Downs Syndrom
The Down’s Syndrome Research Foundation
www.lev.dk
www.downs.person.dk
Landsforeningen LEV
Foreningen Forældre til Mongolbørn i
Down Syndrome Congress
www.lev.dk
Down Syndrome Congress
Landsforeningen LEV (LEV - The National
København
Association for development-compromised
people)
www.dsrf.co.uk
www.handicap.dk
The Down’s Syndrome Research Foundation
De samvirkede Invalideorganisationer
www.handicap.dk
www.downsyndrome.com
Search for Down Syndrome on the Internet
De samvirkede Invalideorganisationer
www.downs.person.dk
www.ds-health.com
(Cooperating Organisations for Disabled)
The Copenhagen Association of Parents of
Down Syndrome Health Issues – News and
www.mosaicdownsyndrome.com
Children with Down’s Syndrome
information for parents and professionals
Mosaic Down Syndrome on the Web
Down Syndrome Health Issues – News and
www.downsyndrome.com
www.downsnet.org
information for parents and professionals
Search for Down Syndrome on the Internet
The Down Syndrome Educational Trust
www.downsnet.org
www.mosaicdownsyndrome.com
www.ndss.org
The Down Syndrome Educational Trust
Mosaic Down Syndrome on the Web
National Down Syndrome Society
www.ds-health.com
www.ndss.org
www.ndsccenter.org
National Down Syndrome Society
National Down Syndrome Congress National
Down Syndrome Congress
· 48
49
·
Litteraturliste
Artikler:
Den forbudte sorg
Ida
The Down´s syndrome handbook – a
Video:
De fik et mongolbarn og opdagede, at
Gurli Fyhn, 91 sider, Komiteen for Sundheds-
Ulla Bondo, 130 sider, Gyldendal 1978.
practical guide for parents and carers
Er jeg stadig gak, gak, mor
det ikke var nogen katastrofe
oplysning 1988.
Richard Newton, Vermilion, 1997.
Video (3 udsendelser om Morten og Peter,
Ida 17 år
Vores børn, marts 1998.
Down Syndrom
Ulla Bondo. 203 sider, Schønberg 1987.
Eva – vi fik et handicappet barn
– en bog for forældre og personale
Foreningen Forældre og Fødsel, 4 sider, 1986.
af Göran Annerén, Irene Johansson og Inga-
Mit handicappede barn – 20 forældre
Lill Kristiansson. 229 sider, Munksgård 1998.
skriver om at have et handicappet barn
der har Downs Syndrom, TV2, 1995).
Regnbuebarnet
– Om at blive far til et mongolbarn
Anderledes, men dejlig
Digte. Søren Mortensen, 72 sider, Gallo 1992.
En oplysningsfilm om det at blive forældre til
et mongolbarn. Udgivet af Mongolgruppen i
red. Annette Pontoppidan m.fl. Kroghs Forlag,
New Approaches to Down Syndrome
Ringkøbing Amt (telefonnr.: 97 49 16 29/
2001.
Edited by Brian Stratford and Pat Gunn. 480
97 33 74 02).
Pjecer:
Jacob bliver aldrig professionel
På Vej. En vejviser til børn med Downs
fodboldspiller
syndrom i førskolealderen
Forældreberetning af Erling Andersen,.
Om at få et barn med handicap
* = materialet findes ikke på biblioteket;
Udg. af Landsforeningen Downs syndrom og
102 sider, Jelling Bogtrykkeri 1993.
Thommy E. Zibrandtsen, Den Sociale
kan bestilles via Internettet: Amazon.com (uk)
Foreningen forældre til mongolbørn i
København, 2001.
sider, Cassell, London 1996.*
Højskole, 1999.
Jørgen Hviid (red. Marianne Christensen),
Communication skills in children
61 sider, Dansk Psykologisk Forlag 1996.
with Down Syndrome
Bøger:
Mette Jørgensen, Klematis 1998.
A guide for parents. Edited by Libby Kumin.
Winnie 3 år
241 sider, Woodbine House, 1994.*
Stougaard og Vogel. Kroghs Forlag 1994.
Barn med Downs syndrom
Medical & surgical care for children
– i familieperspektiv
with Down Syndrome
Evy Kolberg (red.), Natur og kultur, 1996.
A guide for parents. Edited by D.C. van Dyke,
Babies with Down Syndrome
Philip Mattheis, Susan Schoon Eberly and
A new parents guide.
Det gælder dit barn
Janet Williams. 395 sider, Woodbine House
Edited by Karen Stray-Gundersen. 340 sider,
Tino Haapalo, 55 sider, Alma 1985.
1995.*
Woodbine House 1995.*
· 50
Børnebøger:
Søren er mongol
Jeg vil være et menneske
<http://www.amazon.co.uk> eller via danske
boghandlere (vær opmærksom på prisen).

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