“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] 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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