Mange her inne med lite kunnskap om down syndrom...

[hinkelpinkelstinkel]

Er ganske sjokkert, og trodde vi var kommet lenger enn som så..Skulle tro flere av dere levde hundre år tilbake i tid..

Jeg skal ikke sitte her og dømme valgene til de personene som velger å ta abort. Det har jeg ingen rett til, selv om jeg aldri ville tatt det valget selv..(og ja, det vet jeg med sikkerhet), At flere av dere velger å gi deres støtte til disse personene er også helt greit, men å begynne å legge ut om hvor vanskelig livet vil bli med et barn med downs synes jeg er veldig trist..Spesielt når det lyser igjennom , at mange av dere har null kunnskap om emnet..

Skulle gjerne ha brukt litt tid på å klippe ut sitater fra tidligere innlegg, for å vise hva jeg mener..Men nøyer meg bare med å si dette..Sitatene er for mange, og temaet så stort. Følte bare et stort behov for å få "tømt " meg litt her..

 

Håper ikke at disse innleggene representere den generelle oppfatningen til den norskebefolkning..Da er det faktisk ikke rart at fleste parten av babyer med down syndrom aldri ser dagens lys lenger

 

 

[Gjest]

og din er erfaring og kunnskap er?

[hinkelpinkelstinkel]

Lillesøstera mi....Kjenner derfor veldig mange familier med barn med down syndrom...(og voksne)..Har også jobbet mye med disse barna..

 

Men hva mener du da? Uenig med meg.?.Har ikke sett om du har svart på disse trådene ang.temaet

[SlitenÅtrøtt.. alltid & støtt]

Helt enig. Har både jobbet med dem selv. Og har venner med barn som har DS.

Mye er Missforstått ja

[Anonym bruker]

Tror mye av grunnen til at mange sier de vil velge abort, rett og slett er redselen for det ukjente. Det skremmer å ikke vite hva en går til, samme hva det er. Noen velger da å fjerne det som skremmer, mens andre heller velger å "gå på" og å skaffe seg kunnskap.

 

Og så så jeg i et av svarene i en annen tråd; " ....tar en det bort, så slipper en riper i lakken.." (fritt hentet). Dette gjelder nok mange i dag. Jakten på det perfekte er for mange det viktigste. Fasade, og at en klarer å få perfekte barn, er jo noe som er viktig for mange.... Og feil og lyter er da ikke bra i det bildet.

[Anonym bruker]

Jeg syntes også det mangeler endel basis kunnskap. Ser det samme i psykiatrien. Har jobbet i flere år med mennesker som sliter psykisk. Når jeg forteller at de jeg jobber med kjører bil og har jobber ved siden av å være innlagt på klinikk blir folk helt satt ut. Er ikke det farlig da?, spør de. De er som alle andre, sier jeg. De er forskjellige. Og som andre i samfunnet er det noen som er voldlige og kriminelle. Men mange flere er bare veldig redde eller psykotiske, uten å være til skade for andre en seg selv.

[Anonym bruker]

Her er iallefall noens kunnskap og erfaring:

 

In 1993 my youngest son was born with Downs Syndrome. At the time of birth we were unaware that there were any issues until the morning after he was born. To my horror the hospital gave us the option of going home without him, and I am pleased to say that we never gave that a thought. He is now 14 yrs old, has deferred learning and speech, but is very much a typical teenager. I sometimes think that his older brother who's 21 is harder work... It's not all been plain sailing, we deal with issues as and when they arise and in general cope with everyday life no differently than any other family. I'm extremely proud of both my boys as they both offer something different to this world we live in.

Susanne Bain, Ely, Cambridgeshire

 

I did not have a child with Down's Syndrome but I tested positive when my mother got tested. She said that I was her daughter and she would love me regardless. Although I was not born with Down's, it was my mother's acceptance of a Down's baby that allowed me to live. I'm very glad that acceptance is playing such a large role in ending terminations, especially since my mother's diagnosis was wrong and if it wasn't for her unconditional love of me, I wouldn't exist.

Janet, Brentwood, United States of America

 

Having read some of the comments, it is interesting that most of the parents talk about the choice that they had and that few seem to have mentioned the impact that a child with Downs might have on the rest of the family. It was confirmed that our baby had Downs after an amnio test. Although we dearly wanted another child, we also dearly loved our son, aged five at the time, and we did not wish to place a burden on him for caring for a baby with Downs after we had died. It was a decision which we think about constantly and broke our hearts, but I think was the right thing to do.

Anonymous, Gateshead, UK

 

I had my daughter Freya in December 2006 and didn't know she had Downs Syndrome until she was born, but knowing the love and support of my family I wouldn't change my little girl for the world. She is my little angel and our pride and joy and both my husband and son are extremely proud of Freya's achievements.

Suzanne Fawcett, Connahs Quay, Flintshire

 

My first child was born in 1991 with Down's Syndrome which was a total shock. I was 25 and nothing throughout my pregnancy indicated towards Downs. My daughter is now the eldest of four and just "one of the girls". Her speech and language are undoubtedly behind her peer group but she now has so many opportunities to participate in "normal" activities both within and outside her school. She has just passed her GCSE art and is now going on to further her love of art at college and in 2010 will be going to a residential college to prepare her for her working life. She is a happy and fulfilled child whose outlook on life is fantastic. Nothing has ever held her back and each achievement throughout her life so far has been extra special to myself and the rest of the family

Joanna Bowman, Redhill England

 

I am disappointed to see that the BBC did not use person first language in this article. These children are NOT "Down's syndrome babies" but instead babies with Down's syndrome.

Maria, Brookline, USA

 

In 1997 my wife and I were expecting our first baby and blood tests suggested a risk of Down's. We talked over the options with a surgeon who tried to persuade us to have further intrusive tests. We were shocked when, in discussing the risks of having a baby with Down's syndrome, he said they were managing to 'screen out' an increasing proportion of babies with Down's. Our baby did not have Down's syndrome but I will never forget that surgeon and his opinion of people with that condition.

Alan, Dundee, Scotland

 

My son Luke has downs syndrome, and is now three and half years old. He has had many operations in his young life, but this has only served as a catalyst for us as parents to ensure he leads a normal as possible life. We have had to fight diligently to ensure he receives what he is entitled to. We are very proud parents and love him no less.

Neil Hemmings, Teignmouth united kingdom

 

Our daughter is 24 and is severely disabled compared to many others with Down's Syndrome. Her life has enhanced our lives and introduced us to many wonderful people. She lives away from home now in a lovely house with four other young women who are more able than her. This move was not necessitated by any crisis in our ability to continue to care for her, but rather her right to leave home and have her own life, in the same way that her siblings will.

Mrs. Hilary Parry, Croydon

 

Our son Isaac is almost 16 months old neither his heart condition or the fact he has Downs was diagnosed until after he was born. We have had fantastic support from friends, family and health professionals. We have joined the Downs Syndrome Association and attend local events. Isaac is the fourth child in our family and has a wonderful relationship with all his siblings. His condition certainly doesn't change our minds about prenatal testing, any child can develop a whole host of problems at any time in their life and just because some children carry the label Downs Syndrome this should make no difference to what we can offer them. A wider world has been opened up to us and for this we will be eternally grateful.

Ann-Marie & Nigel Sheard, Ackworth, West Yorkshire

 

Claudia was born with Down's syndrome in 1983. We can't begin to tell you what joy, pleasure and love she has brought into our lives. Everyone who meets her falls under her spell. We are so delighted to learn that more parents are choosing to keep their Down's children. We promise you will never regret your choice.

Roger Key, Middlewich, Cheshire

 

I have a daughter with Down syndrome, Katie, who was born 11 years ago. She can read, write, add up, play recorder, plays chess and can deliver a mean check mate! She attacks everything she does with loads of enthusiasm and is very caring. She brings out love in other people and in this world which is in many ways lacking in love, this is her greatest gift. Yes, keep your child with Down syndrome, love them, and they will return it all to you tenfold.

Colette Lloyd, Oxfordshire

 

I'm 18 and have an 11 year old sister who has downs. She likes the same kind of things as other kids, football, dancing, singing along to her Mama Mia CD...badly!, drawing, and stealing my makeup. It frustrates me how she can manipulate mum and dad into thinking she's a fragile little flower then grins at me (behind their back). Still life can never be dull with our Kaitlin around. Last week she was at the Cedar Court Hotel in Bradford being presented with a trophy for young female footballer of the year- she's now got more trophies than me so I'm going to have to pull my socks up!! The only thing that limits our Kaitlin is the low expectations placed on her by people blinded by the Downs label. I think she's ok and pretty cool for a younger sister, but don't tell her that she's big headed enough as it is...

Keldene Mcnulty, Steeton, West Yorkshire

 

We adopted our daughter at 6 months. She has Down Syndrome, and is now nearly 18. She is a delight! Her birth mum did not feel that she could manage her, so we gained her instead. We have never had the slightest regret about that decision. People with Down Syndrome are, in many ways, like all other people - they have a range of abilities from very capable to far more dependent. Some have added physical disabilities, or additional learning disabilities. Our daughter has little spoken language and will always be dependent for care on adults. But she gives us joy every day of her life.

Paul Salter, Middlesbrough, UK

 

I have a daughter with Down's Syndrome who has recently turned 13. Her birth was a complete shock to us but at no point would I have wished for her to be anything other than the joyful and beautiful person that she is. If we had followed the suggestion of a health professional shortly after her birth and given her up for adoption, then our lives would not have been enriched in ways that words cannot convey.

Mary Hayward, Devon U.K

 

As a Girl Guide leader I persuaded the mother of a girl with Down's to let her join our unit as she was not at school in our village and therefore had few local friends. She joined and had a wonderful time and the other girls in the unit gained hugely from her membership - it was their first and probably only experience of Down's syndrome. Our Guide unit did a great deal of outdoor activities which she joined in on. When she left us to go to College I was very pleased that she was able to take part in the Ten Tors Jubilee Challenge. She did it three times and gained Bronze, Silver and Gold medals - one of the few former guides from our unit with a full set of medals!!

O Barnes, Bristol, UK

 

It doesn't help when the BBC use the term "Down's babies" as if they are some sub-species. Please sort your language out once and for all across all your editorials - a child with Down Syndrome - no apostrophe (not a Down's child)

Emyr Williams, Chelmsford, Essex

 

My daughter has down syndrome but we actually don't see it. The early intervention helps to make sure you have the right therapist to perform evaluations as to what to do in areas where your child is lacking. DS is also something the government needs to educate people more about. The notion of a worker at the local supermarket is to me another form of racism as not all DS sufferers work at local supermarket. They work in offices, have a profession, are bright students and members of the society. They are directors, managers etc so to think they are or will end up in local supermarket is just simply dumb.

Myles, London, UK

 

It was a huge shock to discover my new baby had Down Syndrome, but he is a lovely boy who brings joy to all who know him. Things have changed a lot for people with Down Syndrome in the last decade, the most significant change has been in people's attitudes. It really feels like my son has good prospects and every hope of a largely independent life. There are plenty of "normal" people who are incapable of looking after themselves!

Miriam Wood, Farnborough, Hants

 

My daughter, Katherine was born in 1988 with Down's Syndrome. Heartbreakingly, she developed leukaemia when she was one and after 20 months of treatment she died. That short period was one of the most precious, joyous, rewarding and shattering times in my life. The support I received from family, friends, strangers and professionals was truly loving and amazing. Her impact still shines on people who were lucky enough to have known her. In hindsight if I had tested positive at 12 weeks, I would have continued with the pregnancy. Her life was short but very happy and extremely meaningful. She was a child of the universe with the right to be here even if it was just for a short time.

Marie Ross, Melbourne Australia

 

My Wife and I were advised to have a Down's test with our 10 week old son Billy. However we didn't want to put ourselves under any further pressure as we knew (after having five miscarriages) that we wanted our son no matter what after having five miscarriages. I am a teacher and we have four Down's students integrated into our school who have great quality of life. I also think that the numbers are rising because woman are giving birth later on into their late 30's and early 40's.

Andrew Clarke, Warrington/UK

 

When my grandparents had a Down's baby, they were told to put her into a home, and forget they ever had her. She'd be dead within fifteen years. They refused. They fought hard for her right to have a full, happy and productive life. They were fearless campaigners on her behalf. My aunt had that chance. She learned how to manage money, catch a bus, hold down a job. She needed gentle assistance, but don't we all. She was a joy to be with, and she knew how to party! We should never forget the brave parents who helped bring acceptance for their children, who changed the attitude of the medical profession and society, and who did it with little support and no money, in just 60 years. It's amazing what you can do with love.

Rachel, London

 

I would not be without our little boy, he brings joy to us all. He is an inspiration and will have a go at everything. I am pleased that new parents of children with Down's are looking much more positively.

Jackie Till, Cannock, Staffordshire

 

Matthew will be 21 in January, he has helped to arrange the party at the golf club at which he is a member. He prepared the guest list, wrote the invites and has a play list for the DJ. When he was born we were devastated, a baby with Downs Syndrome was something that happened to somebody else. We never thought it could happen to us. Matthew has been included in main stream education and is now at college improving his life skills. We feel proud when he goes out to catch the bus in the morning on his own. Matthew is a great young man who shares an uncertain future along with the rest of us. We are confident that he will cope better than some without a disability.

Chris Gorton, Urmston, Manchester

 

I was told my daughter had Downs when I was about 12 weeks pregnant and every doctor, gynaecologist I saw tried to convince me a termination was the best option. I was still offered this at 26 weeks! One reason given to me by a cold hearted consultant was that "these babies put a strain on the NHS". My daughter was stillborn and when pregnant again, I refused all tests apart from a scan. It's not society who are looking for the "perfect baby", its the medical profession.

Heather, Livingston, Scotland

 

I am carrying a child now whom the nuchal scan shows has a higher than normal probability of having Down syndrome. I was not worried about me or my husband and our ability to cope, but I was worried about my child's future as an adult -- life span, future work, ability to care for themselves. But then I thought of the people with Down's I knew growing up. I got assistance at our local shop from the junior manager's assistant, who is an adult woman with Down's, who chatted about her weekend parties and what she was going to buy her mum for her birthday, and I stopped worrying. It's challenging for everyone in a family if a child has Down's - but so what? It would be a challenge if the child were blind, or deaf, or had a cleft palette or a club foot. It's life. You deal with it.

Kerris, Reading, Berkshire

 

People really should get used to the idea of naming people who have down syndrome as 'a person who has down syndrome' and NOT a 'down syndrome person' - they are people first and should not be called according to the condition they have, this is prejudice. We chose to adopt a baby with down syndrome 13 years ago - one of the best things we have ever done.

Joy Lucas, Saddleworth

[Anonym bruker]

Jeg syntes i allefall at før man går til et drastisk skritt som senabort bør man ha snakket med minst 5 stykker som har downs.

[Anonym bruker]

For meg holdt det å snakke med foreldrene til noen "barn" med Downs. Rådene fra dem var samstemt. Ta abort og sats på et friskt barn neste gang. Jeg er glad for det valget, og for den friske jenta jeg fikk rett etter. Hun hadde aldri blitt født om jeg hadde beholdt et barn med Downs.

[maria isabell]

her er alle barn hjertelig velkommen;)

 

min største bekymring viss mitt lille gull hadde hatt downs er at 1/3 del er født med hjertefeil mener eg å ha lest en plass:)

[Anonym bruker]

Vet,du anonym 18:58, at de som har fått barn med downs som jeg har hørt om, alle ensteminig sier de ANBEFALER å beholde. Nettopp fordi barnet med downs har beriket livet deres!

 

Så det der tror jeg ikke noe på.

[Anonym bruker]

Etter 10 år med erfaring med downs har jeg følgende å si:

 

- svært mange med downs har kompliserte diagnoser med tilhørende helseproblemer. Mange har kroniske smerter.

- det er flere varianter av downs, flere av dem medfører stor utviklingshemming og multihandicap.

- en med downs tar mye plass, vil nå sitt mentale potensiale, og det er sjelden voksent.

 

Disse søte solskinnshistoriene om de søte downsbarna er i mindretall. Realiteten er at downa er en meget alvorlig diagnose, medfører ofte mye smerte og alvorlige komplikasjoner, kan medføre store stferdsproblemer og være en særdeles tøff belastning for en familie. De som ikke innser dette er de som har for lite kunnskap om emnet.

[Anonym bruker]

Merkelig da, at mange foreldre til downs barn sier stikk motsatt?

Men du som jobber med "sånne" har kanskje ikke hjertet på riktig plass.

[Anonym bruker]

Eller har det kanskje ikke slått deg at det er solskinnshistoriene vi hører om? Og hvor mange med downs bor det ikke på institusjoner rundt om, og hvor mange solskinnshistorier hører vi om?

 

Det er bare å lese kalde fakta om downs, så finner du fort ut at solskinnshistoriene er fra de med lett downs, og de er ikke i flertall.

[Anonym bruker]

Finnes mange "normale" folk ned adferdsproblemer også. Les:Psykopater.

De som herjer innenfor hjemmets fire vegger.

Hører sjeldent om dem.

[Anonym bruker]

Jeg er normal.

Mitt liv har aldri vært noen solskinnshistorie.

 

Værsågod neste!

[Anonym bruker]

De er selvfølgelig glade i barna sine selv om de har downs, men det har gjort livet vanskelig for fammiliene. Hvis de kunne velge ville de heller hat et friskt barn, det hadde gjort alt mye enklere.

 

Det er svært tabubelagt å si at man skulle ønske at et barn var anerledes enn det er, men på direkte spørsmål, i min situasjon, var det det de rådet meg til. Ingen så for seg muligheten av å være selvstendig næringsdrivende mor i mit yrke med et barn med downs. Jeg måtte ta et valg.

[Anonym bruker]

Ikke alle friske barn som er enkle heller. Tenk deg om.

 

[Anonym bruker]

Selvfølgelig er ikke alle friske barn enkle heller og man vet ikke hva som kan skje. Skjer det så skjer det og da må man ta det derifra, men i dette tilfellet hadde vi muligheten til å ta et valg som gjør livet mye enklere og som førte til at min yngste datter ble født.

[Anonym bruker]

2041

Du har mange alvorlige skrivefeil. Faktisk er de så graverende at jeg kjenner igjen alle innleggene dine. Du kan rett og slett like godt signere med nick.

[Anonym bruker]

Helt tilfeldig har jeg fått gjort mitt bekjentskap med to mennesker som har ds. Den ene ble født samme dag som meg på samme sykehus. Hans navn var Ruben. Han var den første i Norge som hadde ds og som tok sertifikat på bil. Det andre tilfelle var en venn av meg sin storebror. Begge disse lever i egen bolig og har jobber (riktig nok i vernet bedrift) Ingen av de har smerter.

[___]

Det kan godt hende, men jeg velger nå ikke å gjøre det likevel ;-)

[Anonym bruker]

Så fint for dem. Jeg kjenner mange velfungerende menesker med downs selv. Jeg kjenner enda flere med kompliserte diagnoser og meget alvorlig psykisk utviklingshemming.

[Anonym bruker]

Du kan jo foresten sende meg en PM så ser jeg om du har gjettet riktig. Ganske morsomt om noen kjenner meg så godt at de er sikker på hvem jeg er ut fra stavingen min.

[___]

Ha, ha, der glemte jeg meg ;-)