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Original poster

Please can all parents of children with Down's Syndrome come and chat to me??

90 replies

RememberToPlaywiththeKids · 21/09/2010 20:07

I was told today at my 20 week scan that our baby almost certainly has DS as i had a 1 in 5 risk at 12 weeks and they found a VSD today (hole in the heart).

I cannot go through a termination - it would torture my soul for the rest of my life.

DH thinks having a child with DS will ruin our DD, DS and his life. He would terminate.

He is accepting my position but I am feeling so alone and that I must be 'the strong one' and I would really love to hear all the positive aspects and stories about having a child with DS to remind me that I am not being cruel 'putting my family through this'.

:(

OP posts:
AnxiousLand · 21/09/2010 20:11

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saintlydamemrsturnip · 21/09/2010 20:17

Your dh will almost certainly come round once your baby is born and he or she is a real live person rather than an abstract disability iyswim and of course he or she won't ruin your life!

I don't have a child with Down Syndrome, but my eldest son is 11 and severely autistic with severe learning disabilities. He's likely to need 24 hour care for the rest of his life. He has 2 younger brothers. Is our life harder with him in it? Yes undoubtedly. Is it more rewarding? Definitely. Are his brother's affected? So far only in positive ways tbh. Having a child with a significant disability is a mix of positives and negatives but he has changed my life dramatically. I've discovered a whole wonderful world out there that I never knew existed (the world of learning disabilities). It's a really great community and I'm proud to be part of it now.

Most of the time we're just a family like any other. This weekend ds2 has Stagecoach, ds3 is going horse riding, ds1 is going surfing and we're all going swimming!

There are quite a few people on here whose children with DS have had heart issues so you are most definitely not alone!

saintlydamemrsturnip · 21/09/2010 20:22

Helpful anxiousland, helpful Hmm

pilates · 21/09/2010 20:26

AnxiousLand - if you have nothing nice to say don't say anything!

willowthecat · 21/09/2010 20:27

Why did you post that anxiousland ?

justaboutawinegumoholic · 21/09/2010 20:27

This reply has been deleted

Message withdrawn at poster's request.

AnxiousLand · 21/09/2010 20:39

ffs my opinion

FnD · 21/09/2010 20:40

Hello!

Not sure what the second post is about so in the absence of their having anything constructive to add -I would ignore them!

Anyway, you are no doubt in shock at the moment so please be kind to yourself.

I can only tell you what life is like up til the age of 2 - because thats as far as we have got so far Smile

My ds who has ds is the youngest of 3 and far from ruining his brother lives (or ours for that matter) he has just been another addition to our family! I am not lying when I tell you he is the easiest of my 3 children or that he sleeps the best of them all, eats the best and is the most sociable.

I am also not lying when I say that he is more time consuming - he has lots of appts - and he takes longer to learn things (but it is that bit sweeter when he then does do something for the first time!). But that doesn't affect his brothers - who carry on doing whatever it is they want to do. I have said before, the hardest thing is not having a child with DS, it is having three children and all the juggling and just stuff that comes with having 3.

I have learnt not to compare him to other children his age or our family to other families - as then it's easy for the "why me?" malarkey to kick in and thats not helpful or actually deep down the way I really feel.

You are not putting your family "through anything", life is life and people and families come in all shapes and sizes. My son gives me, his dad and brothers loads of ace stuff just by being him - not least making us laugh every day.

My ds doesn't have a heart condition but there are others on here who can also help you with that.

take care x

Sidge · 21/09/2010 20:46

Remembertoplay - I don't have a child with DS but my DD2 does have a genetic disorder, undiagnosed before birth. She also had 2 holes in her heart which were repaired.

Yes life with her is harder than it would be if she didn't have her disorder, but it's also wonderful. She is a beautiful, funny, kind and loving child who has enriched our lives in so many ways. Her sisters adore her and forget that she has PWS, they just love her (and are exasperated by her as any sisters are!) for what she is. We've been on holiday, go swimming, she goes to school, parties, soft play etc. Life is not that dissimilar to life with any other child, there are just a few more challenges and appointments!

The "bonus" of having a child with a recognised, diagnosed disorder is that you are likely to get a fair bit of support from all professionals. You won't be alone.

Thinking of you.

2shoes · 21/09/2010 20:46

i don't have a child with DS, dd has cp but just wanted to post and offer support.
finding out your baby has a disability is a shock, and their is a grieving stage, but after that tbh it si just like having any other child, just a different path.
my dd has made our lives better, honest, dsis 3 years older and adores her.
it isn't always easy, but nor is having NT kids.
look after yourself and whatever you decide. be kind to your self.

pilates · 21/09/2010 20:54

AnxiousLand - your remark was callous to someone who is obviously in a fragile state of mind and needing constructive advice.

mrtumblewhereareyou · 21/09/2010 21:01

anxious why do you have such an opinion? one word answers are less than helpful especially when they are asked by a very anxious and worried woman.

Original poster
RememberToPlaywiththeKids · 21/09/2010 21:11

Thank you all so much for your wonderfully supportive replies. I'm feeling rather teary at the moment though to be honest, I'm not entirely sure why - I think it's more to do with DH and I being at opposite poles.

Anxious - I did read your response but didn't feel up to replying then. I can only presume that you have a child badly affected by some disability if not DS and are having a difficult time yourself? I can't presume that you would have found your way on to the SN board and posted as you did for any other reason.... I am sorry if that is the case. That is what i am afraid of - that I will end up wishing I had despite it being my worst nightmre. Unfortunately there's no way of knowing how affected baby will be or indeed any of our DCs for any reason further along in life.

OP posts:
Original poster
RememberToPlaywiththeKids · 21/09/2010 21:12

Please can someone elaborate on 'all the appointments'? One a week? more?

OP posts:
FnD · 21/09/2010 21:22

Hello again
you have caught me in the middle of an annual review which is why i am blathering on about appointments!

Actually - the only thing that is weekly at the moment is his portage session which is when someone comes to the house to provide 1:1 development support through play. Actually he also goes to a weekly speech and language group as well (during term times). Other support such as toy library, we can drop in and out of. He also has fairly regular physio appt (by that I mean a half hour appt every couple of months!.

whereabouts in the country do you live as support can vary - perhaps we can link you up with someone who knows more about support in your area.

Of course you are feeling teary - it's been really tough day! We didn't find out until our ds was born but I know for an absolute fact that me and my other half would be in exactly the same position that you are now had we known before he was born. As it happens, my other half has never for a moment not accepted his ds and loves him unconditionally and in fact has I think coped a lot better than me

Sidge · 21/09/2010 21:24

The appointments thing is tricky as you don't know what support your baby will need, or what health problems s/he may have.

Our first year was manic, we had lots of appointments. But then DD was tube fed, on oxygen and was profoundly affected. We had daily visits from the community NICU nurses (DD had been 6 weeks early and also had some brain damage) as well as appts with the HV, speech therapist (for feeding support), OT, paediatricians, cardiology, ENT, audiology, opthalmology and the dietitian. As time has gone by we're now down to about 10 hospital appointments a year!

Sidge · 21/09/2010 21:25

Oh yes as time went by we also had Portage and physio.

We also accessed SN baby groups.

We were BUSY!

mrtumblewhereareyou · 21/09/2010 21:27

remember what you are feeling is totally normal! You sound lovley BTW. The appointment thing varies and as they get older it may get less. My nephew (not DS) but spina biffida had lots of appointents when he was young sometimes 2 a week but now age 8 he has maybe 1 every 4 months.

saintlydamemrsturnip · 21/09/2010 21:27

There are often quite a few appointments in the early years. Many of these (such as portage) take place in your own or when your child goes to nursery, at their nursery setting. If your child has health issues there will obviously be more, but most of the children I know with DS - even those with heart problems - seem to do pretty well once the surgery is out the way and the number of appointments decreases.

Now my son is 11 we have very few appointments. Some with social workers (last one was about 6 months ago), we have an annual review (at school, with school and respite and sometimes social services turn up) and an annual meeting with a paediatrician. I asked to see a neurologist so we had that last year as well and I asked to be referred to genetics so we have had some appointments related to that. That's been unusual though.

saintlydamemrsturnip · 21/09/2010 21:27

own *home

mrtumblewhereareyou · 21/09/2010 21:28

have you been on the Downs Syndrome association website?

FnD · 21/09/2010 21:30

And another thing - I work full time as well so it feels like I am always having to juggle my time - actually it is all do-able. Honest!

Eliza70 · 21/09/2010 21:43

Hi, I had my baby in Jan and we found out when he was born he had DS. It was such a shock but now he's just my little baby. Everyone loves him!

We do physio about once every six weeks, he has seen a paed twice, one eye appointment and he's got a hearing test in a few weeks. He slept through from about a week, fed well (FF) although a bit slowly, and we are now weaning very successfully.

My other son is only 2.7 so he will never know any different in terms of having a sibling with DS.

I posted an article last week that was in the paper here about having a child with DS, it really echoed my own feelings if you search back a few pages you should find it.

There are other mums here with DS kids who are older and I'm sure they will be along soon. When I first posted about my son, one of them said that all children are special, but our DS children are rubies among the diamonds - and it's true!

devientenigma · 21/09/2010 21:48

Hi remebertoplay.
What an awful time you are going through at the mo. Luckily for me I didn't find out my ds was down syndrome until after he was born and that was hours after they found his heart condition. He is now nearly 10.
VSD, from what I have gathered is pretty much run of the mill, sounds blunt but is easily repairable that is if it doesn't fix itself.
As for hospital appointments etc, like everyone has said you don't know what or who you need until you are travelling down the road.
I agree take a look at the DSA website etc. You are also right to start asking questions and thinking about your future. All I can add there though, and this may also sound a bit blunt, is don't live and hang on people's personal stories, your's could be very different.
Thinking of you and if there is anything else you want to know just ask.
Take care x

Original poster
RememberToPlaywiththeKids · 21/09/2010 21:52

I am reading and rereading all your replies. At the moment I am feeling so bogged down with me having control over another adult's destiny (DH) when he has made it very clear that he would prefer a different path. It is an awful position to be in.

justaboutawinegumoholic thank you so much for posting - you are so right. For me the act of going through a medical termination, particularly at this stage, is so frightening for me to even think about. That's not to say that I think that others are wrong for doing it - I am pro choice but just for me.....

sorry i'm repeating myself!

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