Discussion
We recently found out that our (as yet unborn) son has Down Syndrome. It’s made for a tough few weeks, but now there are just two things on my mind;
1- I can’t wait to meet the little guy
2- What is it really going to be like.
I’ve read a few books and what seems like a million web sites, but they all give me the medical angle or the worst case scenario. So the way I see it is PH seems to know pretty much everything I’ve ever been curious about, so why not ask PH.
Do any you have a child with DS? What’s life really like? What do I need to prepare myself for? Frankly anything you can say will help.
Thanks
1- I can’t wait to meet the little guy
2- What is it really going to be like.
I’ve read a few books and what seems like a million web sites, but they all give me the medical angle or the worst case scenario. So the way I see it is PH seems to know pretty much everything I’ve ever been curious about, so why not ask PH.
Do any you have a child with DS? What’s life really like? What do I need to prepare myself for? Frankly anything you can say will help.
Thanks
Sadly I haven't had the dilemma you are facing right now. All I can say is when you look at that little guy and see his eyes and the little smile he gives you it won't matter one bit.
Yeah life will be a little bit more difficult but you will soon learn to change the way you live now and your life will revolve around this wee guy.
I have a good friend up in Scotland that has a wee guy who has epilepsy and fits quite a lot and also their other son has Down Syndrome. These parents go about their daily life as if they have just found the meaning to a wonderful life. They are so happy and so positive that it rubs off on the people they meet. They see it that at least these little people have came into their life.
I wish you all the best.
Yeah life will be a little bit more difficult but you will soon learn to change the way you live now and your life will revolve around this wee guy.
I have a good friend up in Scotland that has a wee guy who has epilepsy and fits quite a lot and also their other son has Down Syndrome. These parents go about their daily life as if they have just found the meaning to a wonderful life. They are so happy and so positive that it rubs off on the people they meet. They see it that at least these little people have came into their life.
I wish you all the best.
I have a six year old boy with Down's Syndrome.
He goes to mainstream school with 'regular' kids and copes well, although he does need 1-1 help for a lot of things.
My advice is to join up with a local support group, and meet other parents who will share experiences and tips.
On the whole, family life is a bit more of a challenge, and everything takes more time (& patience).
There isn't a day goes by that I don't wish he didn't have DS, but there's no way on earth I'd not have him here.
Sadly, there is still a lot of ignorance & outdated bulls
t about DS- even among the medical community.
This is the modern face of DS:
https://www.youtube.com/watch?v=RwlXyoHMfYA
The future's bright.
He goes to mainstream school with 'regular' kids and copes well, although he does need 1-1 help for a lot of things.
My advice is to join up with a local support group, and meet other parents who will share experiences and tips.
On the whole, family life is a bit more of a challenge, and everything takes more time (& patience).
There isn't a day goes by that I don't wish he didn't have DS, but there's no way on earth I'd not have him here.
Sadly, there is still a lot of ignorance & outdated bulls
t about DS- even among the medical community.This is the modern face of DS:
https://www.youtube.com/watch?v=RwlXyoHMfYA
The future's bright.
I have a brother who has Spina Bifida and therefore he is around people with Down's quite a bit.
I'm sorry, but I can't really help with the technicalities of day to day life etc, but all I do know is that all of the people who I have met who have downs, are the most friendly, and happy people that I have met.
I'm sorry, but I can't really help with the technicalities of day to day life etc, but all I do know is that all of the people who I have met who have downs, are the most friendly, and happy people that I have met.
A friend of ours has Downs Syndrome and is a lovely chap living a great life.
Although he would struggle in the workplace due to his level of DS, his social life is good and he is even planning to get married next year.
I think things are much more suitable for those with 'special needs' now than they were in the past.
Although he would struggle in the workplace due to his level of DS, his social life is good and he is even planning to get married next year.
I think things are much more suitable for those with 'special needs' now than they were in the past.
Hi Jonathan,
Our son Charlie has Down Syndrome, he's 29 moths now, I consider us lucky that we were in the same position as you that we found out about it before he was born, so we tried to prepare ourselves as best we could, joining local groups and also internet groups to talk about any concerns we had to get a support network in place before he arrived.
Charlie was diagnosed with duodinal atresia so we had to travel to Oxford for the birth so that he was in the right place for the operation. We spent 3 weeks in Oxford while he recovered, so got lots of training on nappy changing and feeding from the nurses.
Although we don't have any other children the early months I don't think were any different than any other child, he slept ate and poo'd
As he's started to get older it's more noticeable that his development is slower than a child of the same age without additional needs, he has taken a few unaided steps but doesn't walk yet (but will happily cruise around the sofa) he has orthopedic shoes to help his walking as he has quite flexible joints, and he doesn't have any real words, but he is very good at the signs that he has learned, so he knows how to tell us that he is hungry, wants juice and wants to watch mr tumble for the hundredth time
It does hurt when I see our friends kids of the same age running about and doing things Charlie can't do yet, but I know that he'll do all these things in his own time.
Once your son arrives prepare yourself for load of hospital appointments as they will closely monitor heart, hearing, eyesight.
Can't think of anything else to say at the moment, I'm sure I'll add more when I think of stuff. Di's reply will probably be better than mine, but feel free to drop me a pm if you want a chat.
If you haven't read welcome to holland it's a good read, written by a lady who has a child with additional needs
http://www.our-kids.org/archives/Holland.html
I love Charlie to bits. He's such a cool little dude and I wouldn't change him for the world.
This is a great video, well worth a watch
http://youtu.be/Ju-q4OnBtNU
Our son Charlie has Down Syndrome, he's 29 moths now, I consider us lucky that we were in the same position as you that we found out about it before he was born, so we tried to prepare ourselves as best we could, joining local groups and also internet groups to talk about any concerns we had to get a support network in place before he arrived.
Charlie was diagnosed with duodinal atresia so we had to travel to Oxford for the birth so that he was in the right place for the operation. We spent 3 weeks in Oxford while he recovered, so got lots of training on nappy changing and feeding from the nurses.
Although we don't have any other children the early months I don't think were any different than any other child, he slept ate and poo'd
As he's started to get older it's more noticeable that his development is slower than a child of the same age without additional needs, he has taken a few unaided steps but doesn't walk yet (but will happily cruise around the sofa) he has orthopedic shoes to help his walking as he has quite flexible joints, and he doesn't have any real words, but he is very good at the signs that he has learned, so he knows how to tell us that he is hungry, wants juice and wants to watch mr tumble for the hundredth time
It does hurt when I see our friends kids of the same age running about and doing things Charlie can't do yet, but I know that he'll do all these things in his own time.Once your son arrives prepare yourself for load of hospital appointments as they will closely monitor heart, hearing, eyesight.
Can't think of anything else to say at the moment, I'm sure I'll add more when I think of stuff. Di's reply will probably be better than mine, but feel free to drop me a pm if you want a chat.
If you haven't read welcome to holland it's a good read, written by a lady who has a child with additional needs
http://www.our-kids.org/archives/Holland.html
I love Charlie to bits. He's such a cool little dude and I wouldn't change him for the world.
This is a great video, well worth a watch
http://youtu.be/Ju-q4OnBtNU
Edited by Matt172 on Thursday 5th February 22:54
Firstly, Congratulations 
We had a pre natal diagnosis too, it was a bit of a tough time but we had struggled to conceive, so no way were we thinking of any other option
We now have Charlie, who was 2 in September
The main thing is health issues; now the docs have the diagnosis, they will scan scan and scan, it can pick up issues, which can be fixed early on, apart from that they will be like any other baby, just doing things in their own time.
I can give you a mums point of view if it will help the missus too as Matt (dad), who is currently typing his reply to this too, will give one point of view, I would give another
Charlie is our first and only child, so to us, he is just like any normal kid, but against his peers; well they were walking a year ago, yet he is still just cruising and crawling, makes life easier for me to be honest
It does get to me seeing him with his peers, every time, but it's just something you get used to, it hurts less now seeing how far behind he is, once he hit 2, I kind of just ... relaxed. Don't care what he does and when he does it now
He is incredibly happy, smiley and cuddly, and also extremely grumpy at times, especially if his dinner takes more than 10 seconds to arrive; like any other kid
People will stare, people will sympathise, they will also make stupid comments ('I blame the chemicals they put in the crops!') but we just (try to) laugh and move on.
I will recommend the makaton and baby signing, we did it early on with Charlie and started to get signs back at 18 months, he now signs when he is hungry, tired, what he wants to watch on TV etc.
The other thing is colds, chesty cough issues and winter. Most kids with lower immune systems and narrow tubes will suffer more or worse with colds, Charlie has been like any normal kid with this but I still dread winter, seems Charlie is in minority as a lot of his other DS peers seem to suffer
Obviously health issues, I am sure you have googled it, heart issues, bowel issues, respiratory issues, eyes and ears constant checks, possibly orthopedic shoes for stability. More appointments than usual, but more than manageable
Charlie had bowel issues and he has needed the shoes, but nothing else as yet, hearing is debateable but he can hear well, just not picking up lower sounds consistently due to possible glue ear
What I will say say is how much better our life is since he came along, all of a sudden there is another world in front of us, another community, extra to what we would have had before, very supportive and understanding (like a secret club)
We had a pre natal diagnosis too, it was a bit of a tough time but we had struggled to conceive, so no way were we thinking of any other option
We now have Charlie, who was 2 in September
The main thing is health issues; now the docs have the diagnosis, they will scan scan and scan, it can pick up issues, which can be fixed early on, apart from that they will be like any other baby, just doing things in their own time.
I can give you a mums point of view if it will help the missus too as Matt (dad), who is currently typing his reply to this too, will give one point of view, I would give another
Charlie is our first and only child, so to us, he is just like any normal kid, but against his peers; well they were walking a year ago, yet he is still just cruising and crawling, makes life easier for me to be honest
It does get to me seeing him with his peers, every time, but it's just something you get used to, it hurts less now seeing how far behind he is, once he hit 2, I kind of just ... relaxed. Don't care what he does and when he does it now
He is incredibly happy, smiley and cuddly, and also extremely grumpy at times, especially if his dinner takes more than 10 seconds to arrive; like any other kid
People will stare, people will sympathise, they will also make stupid comments ('I blame the chemicals they put in the crops!') but we just (try to) laugh and move on.
I will recommend the makaton and baby signing, we did it early on with Charlie and started to get signs back at 18 months, he now signs when he is hungry, tired, what he wants to watch on TV etc.
The other thing is colds, chesty cough issues and winter. Most kids with lower immune systems and narrow tubes will suffer more or worse with colds, Charlie has been like any normal kid with this but I still dread winter, seems Charlie is in minority as a lot of his other DS peers seem to suffer
Obviously health issues, I am sure you have googled it, heart issues, bowel issues, respiratory issues, eyes and ears constant checks, possibly orthopedic shoes for stability. More appointments than usual, but more than manageable
Charlie had bowel issues and he has needed the shoes, but nothing else as yet, hearing is debateable but he can hear well, just not picking up lower sounds consistently due to possible glue ear
What I will say say is how much better our life is since he came along, all of a sudden there is another world in front of us, another community, extra to what we would have had before, very supportive and understanding (like a secret club)
Edited by missdiane on Thursday 5th February 22:57
Congratulations! When's the little dude due? My 2 year old daughter has cerebral palsy, I had a few friends with DS when I was younger.
Probably the only useful thing I can possibly offer right now: you're gonna hear a lot of stereotypes. They are ALL bks, every single one. Every single facet of human diversity exists in people with and without Down Syndrome. And everything that's joyful, and indeed bloody awful, about parenting a small child is likewise equally likely to be experienced by people whose kids are entirely typical, and not.
Probably the only useful thing I can possibly offer right now: you're gonna hear a lot of stereotypes. They are ALL b
ks, every single one. Every single facet of human diversity exists in people with and without Down Syndrome. And everything that's joyful, and indeed bloody awful, about parenting a small child is likewise equally likely to be experienced by people whose kids are entirely typical, and not.Thanks for all your replies. We’ve had a few extra scans and so far he seems to be doing well. The specialist at Great Ormond Street felt that the heart looked good, that was our biggest concern so we both feel a whole lot better now. Also we had another scan at our local hospital and everything seemed fine.
It is the associated conditions that cause us the most concern, not the Downs itself.
I know that living with Downs brings challenges, but also brings huge rewards as with any other child. But I have just had no exposure to Downs before so I have an amazing lack of knowledge on the subject.
I’ve taken the advise and contacted the Downs Syndrome Society and will look to try to connect to other parents in our area. As I said before, I just want to meet the little guy now, and get on with things, rather than spend everyday worrying about the unknown.
It is the associated conditions that cause us the most concern, not the Downs itself.
I know that living with Downs brings challenges, but also brings huge rewards as with any other child. But I have just had no exposure to Downs before so I have an amazing lack of knowledge on the subject.
I’ve taken the advise and contacted the Downs Syndrome Society and will look to try to connect to other parents in our area. As I said before, I just want to meet the little guy now, and get on with things, rather than spend everyday worrying about the unknown.
Oh, and I forgot to say. Thanks very much for the congratulations. With my previous two children everyone congratulated us and it seemed normal. Now with the little guy everyone either says ‘oh sorry’ or ‘they’re such happy people’. I honestly don’t know which of these annoys me the most!
I wanted to come back and provide an update, so here it is.
Just like Matt said, our son came early (three weeks for us also). He has a few health challenges, but we couldn’t be happier, and we are confident that he will be fine. Hearing peoples tales of things progressing slowly but well has helped us to realise that everything can work out. Huge sections of the internet are just horror stories, but it was great to hear of people having fairly normal lives. So thank you all.
Just like Matt said, our son came early (three weeks for us also). He has a few health challenges, but we couldn’t be happier, and we are confident that he will be fine. Hearing peoples tales of things progressing slowly but well has helped us to realise that everything can work out. Huge sections of the internet are just horror stories, but it was great to hear of people having fairly normal lives. So thank you all.
Always be careful what you read on the net.
Like the gent on the same position of you says if you can join some sort of group for support advise it should be good always nice to meet new people / friends anyway, maybe some petrol heads .
Congrats on your little bundle of joy.
All the best
Like the gent on the same position of you says if you can join some sort of group for support advise it should be good always nice to meet new people / friends anyway, maybe some petrol heads .
Congrats on your little bundle of joy.
All the best
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