Post by purpleness1974 on Apr 23, 2011 16:09:26 GMT
Hi, i am 28 weeks pregnant with a little girl who has already been through it. I was never going to have the down's test, but my baby became very ill, so she needed to have a shunt fitted to drain fluid from her lungs and the doctors wanted to do an amnio at the same time to know what was causing so many problems. This came back saying she had down's. We are fine with this but are desperate for info from other parents on how to tell brothers and any other info you would like to give us . ;D
Hi, I;m a mum of 3 and one of them had ds. We didn't find out until after he was born. We already had a daughter who then was about 6 1/2 yrs old so we had to tell her about the ds. We didn;t tell her straight away as he was in special care unit but she had suspected something was wrong and kept asking if he was ok but I think she was meaning was he ill. We waited until we had been home a few days and then told her. We said that he'd needed the extra help at hospital with feeding and keeping warm because he had something called downs syndrome. We said he wasn;t ill but it would just take him longer to learn how to do things but with lots of help from us all he would be able to do them in time. She took it all in her stride and loves him to bits and is so patient with him (most of the time). We now have another son who is 2 (tomorrow) so eventually we will explain things to him too. There is a book which can help explaining things to a child but it would depend on how old your children are, its called 'Lets Paint the Octopus Red' and is aimed at young children I think. I;m sure you must have lots of questions so ask away, I;m sure there will be lots of others about who will also be able to offer advice. Take care x
Hi there, how exciting to have another baby arriving on the board soon !! My name is Tace, I have a daughter Freya who is almost 8 and a son Leo (DS) who is 6, Freya was only 19 months when Leo was born, so it wasn't an issue straight away for us, another good book is "Our Brother Has Down's Syndrome" by Shelley Cairo, I got mine from Amazon, I found it really helpful. We have always just explained to Freya that Leo's brain and body don't work as well as hers and it takes him longer to learn things. She knows what Down's Syndrome is, she knows about extra chromosones etc but all thats important is it takes Leo longer to do things. Hope that helps? Sooo looking forward to getting to know you all , congratulations on your new bundle still wrapped up cosy in your tummy, can't wait to meet her too!! I found this site soo helpful when Leo was little, we live in quite a small place so there was no-one nearby I could realte to, it was a lifeline for me and my family, hope you do too.
Hi Im karen mum to Lucy age with(DS and autism) and mum to Luke age 12.
We didn't know Lucy had DS until she was born, even though I was high risk due to my age,and triple test result, it was still a shock.
I couldnt handle telling my son, so my husband did that, I was still to emotional, and wanted it to be a positive experience and we had very little information to hand... He showed Luke some pictures on the internet, and explained Lucy would learn and do most things, but it would take a bit longer. Luke was an absolute star though, and still is today, Lucy is JUST his little sister.
Lucy was diagnosed with autism last month, but she is and will always be my lovely Lucy.
Hi i'm Lisa, mum to Sam & Harrison (aka Harry) Harry has down syndrome, he is nearly 7 yrs old and we received his diagnosis when i was pregnant, also just by chance (long story)... I was also late in the pregnancy when we received the diagnosis and Sam was actually in the room with us at the hospital when we were told, although Sam was only 3 yrs old at the time so he didn't really understand. Sam has the book which Claire mentioned 'we'll paint the octupus red'... it's a lovely book for siblings & i think the first time we read it to Sam he didn't ask too many questions but then later on he would sometimes ask if we could read it, i think it helped him maybe when he was trying to understand about his little brother, there is also a Q&A section at the back which is good.
My pregnancy was quite stressful because of health reasons, so i would say to you please try and enjoy your pregnancy as much as you can and not to worry too much about things, easier said than done i know, but it's good in some ways that you have your babies diagnosis now because it means you have some time to 'get your head round' what's happening before the arrival of your gorgeous little girl.
Personally i can't believe my Harry is going to be 7 yrs old in about a week!! It has been 7 amazing years, at times very challenging & emotional, but i wouldn't change a thing... having Harry has changed my world in so many wonderful ways ... sometimes it feels like i'm a member of a very special exclusive club, i wouldn't have necessarily chosen to join beforehand but now i'm in this club i feel very privileged ;D lots of love & luck to you xx
Holly is our middle one, so we have 2 older and 2 younger than her.
We also found out during PG that our DD had DS. At the time the 2 older boys were 4 & 6 years old. We just told them that baby would need their big brother help with some things, because she wont be able to learn them as quick as them, but in all things she will love them them and play with them and think they are the most amazing brothers just like any baby brother or sister would.... and she does
Hello! Just wanted to welcome you! I'm mum to Daniel (4) but he doesn't have any siblings, so I cant share any experiences I'm afraid, but when we have explained DS to other children, we've just said that Daniel can do all the things they can, but it might take him longer to learn them. Children in his class at school seem to naturally want to help him, and don't really question it. How old are your other children? Congrats on your pregnancy - sounds like you've been through it a bit - there's always someone here who can help Looking forward to getting to know you and your family. xx
Post by purpleness1974 on Apr 25, 2011 17:14:36 GMT
Thank you all for your messages. I have Jessica who is 15, Thomas who is 12 ( he has auditory processing disorder and slight ADHD, so struggles a little with understanding) and Noah who is 6. For my partner Adrian this is his first child, we have been together 5 years. I found the site by looking for forums on ds. Really struggled to find any. x
Hi , just wanted to say that this forum was an absolute life line to me in our early weeks & months . We didn't know Rachel had DS until after she was born & support from hospital, HV etc wasn't great but being able to come on here read bits & pieces , read other peoples experiences, ask questions etc was great support. Can't quite believe where the time has gone as Rachel is now 4 & we are getting ready for her to start school in September ! My other children are much older so it wasn't so difficult to explain to them , they were 23, 20 & 14 when Rachel was born. xSusan
Hi, I have a 4 year old son with downs and a 2 year old daughter, We've not had to explain anything to either of them yet but I'll be looking into those books. I'd agree that you should just enjoy your baby at first - anything else can wait! I wasted so much time being traumatised and miserable and my son is the delight of my life so I'll always regret the wasted time. There is a lot of help and support available and the world is a different place for people with downs than it used to be - my son just floats through being adored by everyone!!! nice to meet you and congrats on your baby! xxx
Hi and welcome to up for downs. im Shan and i am mum of 4. Josh who is 9 and is downs, Maddison is 5 , Kaitlyn is 3 and Alexander is 2. This is a wonderful site and everyone is so freindly. Have you been put in touch with your local downsyndrome assoication. its worth a look at xxx They should also beable to advise you how to tell your older children xxx