Possible 3rd child with downs syndrome - experiences?

[rajasthan]

hello

I've not posted here before but i'm hoping you might have some experiences or advice to share - I think there are similar threads from a while ago but i'd be grateful for any info you have. I'm 13 weeks pregnant with my 3rd child (currenty have 2 boys one almost 4yrs and other 2.5yrs neither have any special needs) I have just found out that we have a 1:16 chance of downs/chromosomal issues with baby no.3. I'm having the CVS test tomorrow so we can prepare ourselves with some concrete info and it may well turn out not to be downs but I was just wondering if anyone has a child with downs in a family with more than one child and how the experience has impacted on you and your family - both positives and challenges. I know every situation is different, and i'm probably getting a bit ahead of myself here but it would be really useful to hear other people's stories.

Thanks

Hi rajasthan,

Congratulations on your pregnancy.

I have a DD with Down's, but she is an only child, so I'm afraid I don't have any experience on how that impacts the rest of the immediate family, but I didn't just want to read and run.

I'm sure there will be others along soon to give their experiences, but in the meantime, if you do want any advice on what it's like to raise a child with Down's then please feel free to PM me.

Good luck with your tests tomorrow.

Hi Rajasthan
I normally just lurk on this board, but have 2 boys, the younger (by just over 2 years) has DS. He needed some time in the neonatal unit due to feeding difficulties, and the slow feeding continued after coming home. His older brother found it hard when I was in hospital with his brother, and was jealous/frustrated by the time I had to spend feeding his brother, but this could have happened with any baby, not just due to DS. He has needed a lot of appointments, and we were lucky that older brothers nursery were very good about taking him for extra sessions, as I would have found it hard to bring him to everything and concentrate! We don't have any family nearby. However overall it's been a positive thing having an older sibling, as the younger one is desperate to do everything, and I'm sure it's helped his development.

Thanks proudmum74 - and for the offer to find out more info from you.

lazyhippo - thanks for sharing that and I'm pleased your youngest is home with you now. Could I ask what sort of additional appointments did you need? Also have you found it ok balancing the needs of both kids? Like you, we don't have any family nearby either so I think that is a worry for me.

Hi rajasthan

I have a ds (4y) who has down's syndrome and an older dd aged 9y

For me raising a child with DS has not had any major impact on how we are as a family, especially in the early years. The only thing I'm beginning to notice now is that at almost 5 ds still needs the kind of support and supervision that he needed as a toddler and dd does make comment on this occasionally. I've always been aware of this being a potential issue and we have made a point of having special days / afternoons after school together so she doesn't feel left out.

Also with regards to hospital appointments and when we have home visits from ds early intervention team (speech and language, portage) I made sure they were always scheduled for term time and made sure everyone was aware of this.

I'm sure there will be challenges ahead, but at this moment in time we're doing pretty well as a family and whilst our extended family is in different parts of the UK we still feel very supported

Hi raja

All I can say is to not get caught up in peoples personal experiences, like you said every child and every situation is different. The trouble is you don't know how the road will go until you are travelling along the way.

The majority of 'stories' out there will be positive, however you don't know how positive your own story will be until you are writing the book.

There will be an impact on the siblings regardless of whether the child be DS or not severe or NT, all you can do is to be there for them all.

It also doesn't matter whether the child is mild, moderate or severe you will love the child regardless as you do your others, you will find attributes and qualities you never knew you had. There will be all different times and all different emotions along the way but you will find the strength, the support thats needed (now all those who know me are thinking well you haven't, but realistically I have as I'm still here!!).

Yes I am a parent of an 11 year old child who has DS, is at the severe end and is complex and challenging. Apart from his heart condition which was diagnosed at birth before the down syndrome his needs/issues/problems/diagnosis has accumulated as the years have progressed. His siblings, although they love him do feel they lacked attention, support etc due to him taking a lot of our time. There is times I don't cope and my son has never had the correct support, however I am in a minority.

Please feel free to ask anything. Please focus on the beginning of my post, arm yourself with the facts of what can coincide with any LD, not just DS. Only you know what is best for you and your family.

Take care x

Thanks for the feedback - really appreciate it. I guess any new baby will have an affect on the family in both good and challenging ways - I think, currently knowing relatively little about downs, i'm just trying to prepare myself with as much information as possible so should the cvs results come out positive I have a better idea of what our family would be dealing with.

I've got some information through from the midwife, but if anyone has found any particular website/support group very useful please let me know.

Thanks again

I don't have a child with DS but I do have 3 children (all boys), the youngest has quite severe ASD. DS1 and DS2 are 2 years apart - so not quite as close as your older two. I think the birth order, closeness in age & fact they are both boys has helped with dealing with the fallout of a child with extra needs. DS1 and DS2 lives are less affected than other families I know in similar situations. We have a great support network of friends via our other children and this has really helped as we have parents via nursery and school who will take in DS1 and DS2 when DS3 has appointments. DS1 and DS2 have very typical social lives and other parents help ferry them to all the usual activities e.g. football and some will even take them for sleepovers etc so they don't miss out. We could not have asked for a better reaction amongst the parents at school. Their friends have just grown up with DS3 so having friends over is never a problem, they all know what DS3 is like. DS1 and DS2 get on well so while they do get fed up with how much attention DS3 needs from us, they quickly go off together and find something to do which takes a huge pressure off. I think its easier to have 3 than 2 in this situation. They were from quite young able to understand and look out for DS3 - we have always been very honest with them. I think that they will grow up to be more independent, self sufficient and tolerant as a result. They do moan sometimes about how much of our time DS3 needs, but they also recognise how lucky they are to not have the difficulties he does and can see their life is easier than his so actually they don't have much to moan about. Having DS1 and DS2 go through school first has really helped as they are well behaved, intelligent boys and when DS3 came along there was never any question mark over our parenting about his atypical behaviour, we already had a good relationship with school and as a result school has been supportive. I won't pretend that it won't be very exhausting especially until your older two are in school, but I think if you have to be in this situation having two older children of the same sex and close in age really helps.

DS organisation

Hi again rajasthan

Would also second the recommendation of the DSA website who have excellent info for new and expectant parents ( and a helpline number)

Another good website is Down's Syndrome Education International, they have really interesting research articles and their online store has really good information books.

DSE

Would you consider gettting in touch with your local DS support group? We've often had expectant mums come along for support and they've found it really beneficial speaking to other families and meeting babies and children with down's syndrome. Your midwife may know of one, also I think you can locate them through the DSA.

I can't emphasis enough that should you travel a path similar to ours all the information in the world may not prepare you for the future. I must also stress although we are a minority all the books, contact, websites and forums did not prepare us for our journey, some of it, yes but the sat nav is stuck and the technician can't help iyswim. It's about where the future goes and no one can predict it. Sorry if this is vague, it's just people tend not to hear the severe end and it is hard work, life changing, however I'm trying to do this as positive as possible and the love for your child helps immensely.

Feel free to ask anything! We had paediatric apps every 3 weeks, but that was because he wasn't growing. Now every 3-4months. Bowel investigations. Also cardiac and orthopaedic, because he had specific complications, happily seem to be correcting themselves. Physio, initially monthly, at home. Speech and language therapy every few weeks as v difficult to wean, these were at home. Hearing tests yearly, although failed one so repeated more regularly. as he gets older, appts for us starting to settle.
We were given identical antenatal screening test results to yours, although didnt test further. Whilst I was still pregnant, we saw an teenager when we were out one day, and guessed he may have had severe autism. It made me realise that only a minority of children's problems are identified at birth, and most people happily have a perfect baby, but a few unfortunately develop conditions later. For me, that helped put my risk into perspective. Sorry, I haven't expressed tht v well, older child v noisy next to me!
In terms of balancing all family's needs, then I think we just get on with very thing daily, and don't really think about it now. At present the boys play together, annoy each other and drive me distracted, so probably not really any difference whether one has DS or not. I cant imagine life without either of them now. There are obviously issues, which change as they get older. Sorry will have to stop as too much noise! May not be able to reply for few days but will check again when back

All of this is so useful to help me get my head around what might be to come.

Thanks sonora - I would get in touch with a support group - once we know what the test results show.

devientenigma - I appreciate your comments, I know my own experience might well be different to everyone else's - and it sounds like you have had some unusual and tough challenges. For me though right now I feel a bit like the way I did when I was expecting for the first time; wanting lots of information and shared experiences to help me get to grips with becoming a mum before finding my own way...only in this case with some very different challenges. If you would like to share with me any of the things you have been through that you think might be beneficial for me to hear please do, but only if you feel comfortable doing so x

Agnes & lazyhippo - thanks for being so open. A lot of this practical stuff is great. Has sleep been much of an issue?

Back from having the cvs test now which all went fine and we'll get the results on Friday.

xxx