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

[RememberToPlaywiththeKids]

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'.

:(

Further up the thread you mentioned your dh would like to hear about people with DS as adults.
I have worked in a learning disability service with adults with DS and other LDs and as mentioned the usual scenario is of a couple of people sharing a house or flat with either live in carers or support workers coming in depending on the level of need. People get support to access education and leisure opportunities and with innovations like individual budgets it can be personalised to that individual rather than everyone getting shipped off to a day centre.
Even if DS is reducing due to antenatal diagnosis (and I'm not sure it is because of older mothers) there are a lot of people with LD from other causes and relationships between residents were not unusual. We were once called upon to pronounce on a client's capacity to form a civil partnership so the whole range of life experiences are open to people- at least those with milder degrees of disability.

Saggar - thank you for your reassurance that I'm not just being a selfish cow. I do hate myself for wishing things were otherwise because I feel it's disrespectful to my baby BUT my feelings are for my baby's sake not for mine - but that only makes me feel marginally better. Plus I am a firm believer in the things that make us happy in life are the simple things, whether we have severe learning difficulties or we are the prime minister, so i am holding on to that thought.

Crunchyside - do you know, I think I saw a programme about that on TV a few years ago?! DH and I saw it together and I'm pretty sure it was before we had kids or just after we had DD and we were both really impressed and genuinely looked in to whether or not we could tie in a stay there with other things in the area as it looked such fun with such a brilliant atmosphere. Thank you for reminding me about that. Also both my kids (3 and 2) do ALOT of cooking with me. Infact it's rare that I get to cook a meal by myself at all, so I anticipate that DC3 will also enjoy throwing a few ingredients around!

mamadoc - thank you - also DH is quite worried about the adult phase being full of sadness and pepople with DS 'knowing that they are missing out' and living in a general cloud. What would your response to that be?

The emotions are hugely complex aren't they? I wish things were different for my dd but I wouldn't want to change her IYKWIM. Some people describe it as similar to a breeavement because you have a grief for the loss of the child you thought you'd have, for the unspoken hopes and plans you had for them. Those hopes and plans just have to be tweaked a bit There's no right or wrong way to feel - you just have to work through it best you can. Take care.

Congratulations on your pregnancy!
So pleased to hear that the scan news was better than first thought.
My friend's DD has DS, it wasn't diagnosed until after birth and she needed cardiac surgery straight away so it was all a bit of a shock.
Like any child with SN there are times you mourn their differnce and times you celebrate it.
My friend's DD has 3 older brothers who adore her, they wouldn't change her for the world.
Good luck for you and all your family.

Phew! am really pleased to hear about the positive news about your baby's heart.

Comparing is natural and yes does make you feel rubbish - not sure what to recommend, I just recognise that I do it, how it makes me feel and then try and stop!

Just wanted to say that the other night I was having dinner with a group of people who all just happened to have learning disabilities including a couple of people who have DS and our conversations that night were all about the usual - music, tv, jobs, relationships, even having children. I went home at the end of the night and looked at my little ds with ds and thought that there is hope after all and that comparing can be a good thing sometimes.

Anyway, just wanted to wish you well with the rest of your pregnancy - can't wait to hear about the arrival of you new baby!

Thank you x I have to say - I am having to reach in to my soul and that I think is a good thing and everyone should have a stab at it from time to time!

FnD - who's dinner party was it?

SB can you remember how long it took for your friends baby to recover from the heart surgery? That must have been an awful shock - we do feel very lucky that we 'know' what we know now - DH especially, feels that he needs this time to work through his thoughts without the negative ones being able to affect the baby.

I am worried how he'll be after the birth. I think he had a form of PND after the birth of DC2 - he was foul to me for a few months. I am genuinely scared as to how it's going to be this time. no violence but just needling away at me, being sarcastic, picking up on absolutely everything I said and did and being generally argumentative and deeply unpleasant. He gets like this when he's stressed unfortunately and causes lots of long term damage. It was a nightmare. i remember at the time thinking to myself that we would just not cope if we had a disabled child :(.

oh well. it's too late now, we will just have to do our best. The trouble is with all the night feeds etc, I tend to go very quiet because i'm just so tired and i just can't cope with small kids being what they are, new babies being up every couple of hours AND a DH who is being awful. Fingers crossed.

Hi

Just read your last post. Our DH seem very similar.

Mine really struggled during teh early months with DS1 (who was quite demanding) to teh extent that I felt he had kind of PND - I even managed to get him to go the Drs - which is unheard of.

It has been very different with DS2 (who has DS). He is such an easy and affectionate baby that none of the problems we had last time have arrisen. He slept through from 10 til 7 from 11 weeks, rarely cries unless he needs something and then not for long and is a gogerous smiling delight. DH fell in love with him very early on in a way that was out of the question for DS2. Every baby is different (and every DS baby is different too) but hopefully this gives you a glimmer of hope.

Also just wanted to say how much responses to this thread are helping me as someone still near to the start of the journey.

I can't imagine what it must be like to deal without the shock and dissappointment without a little bundle in your arms. you are doing really well!! And things will be fine xx

PS Henry is 18 weeks and gastric issues werent picked up till after birth.

His scars are already almost invisible.

Also a reading recommendation Babies with Down Syndrome - A new patrents guide
ISBN 1-890627-55-0

My library had 2 copies - gives loads of info (don't get freaked by all thethings people with Downs can have few if any will apply to any one child) and lots of quotes from parents about the lows as well as the highs.

Feel free to message me if I can do anything to help x

you can also download this from the DS website for free. Here is a quote from it that really moved me:

This is one mother's interpretation
of the experience
of having a child with
Down's syndrome:
Welcome to Holland
When you're going to have a baby, it's
like planning a fabulous vacation trip ?
to Italy. You buy a bunch of guide
books and make your wonderful plans.
The Coliseum. The Michelangelo David.
The gondolas in Venice. You may
learn some handy phrases in Italian.
It's all very exciting.
After months of eager anticipation,
the day finally arrives. You pack
your bags and off you go. Several
hours later, the plane lands. The
stewardess comes in and says,
"Welcome to Holland."
"Holland?!?" you say. "What do
you mean, Holland?? I signed
up for Italy! I'm supposed to
be in Italy. All my life I've
dreamed of going to Italy."
But there's been a change in the flight
plan. They've landed in Holland and
there you must stay.
The important thing is that they
haven't taken you to a horrible,
disgusting, filthy place, full of
pestilence, famine and disease.
It's just a different place.
So you must go out and buy new
guide books. And you must learn a
whole new language. And you will
meet a whole new group of people
you would never have met.
It's just a different place. It's slowerpaced
than Italy, less flashy than
Italy. But after you've been there
for a while and you catch your breath,
you look around... and you begin
to notice that Holland has windmills...
and Holland has tulips. Holland
even has Rembrandts.
But everyone you know is busy
coming and going from Italy... and
they're all bragging about what a
wonderful time they had there. And
for the rest of your life, you will say,
"Yes, that's where I was supposed
to go. That's what I had planned."
But... if you spend your life mourning
the fact that you didn't get to Italy, you
may never be free to enjoy the very
special, the very lovely things...
about Holland.

Hi again,
I'm struggling to remember as it was a long time ago! She was in hospital for a couple of weeks. She was well enough to start school, nursery etc. on time

Hello RememberToPlayWithTheKids.

I came over to Mumsnet this evening for the first time, had a browse and came upon your post. I can imagine the despair you are feeling - torn between the love of your baby and the hurt and pain your husband is feeling.

May I tell you my story? My son has Downs and he will be 20 in a few weeks. I had no idea that he would be a baby who had DS and it was a terrible shock to find out a few hours after the birth. My husband went into complete shock and immediately told me that he couldn't accept a baby with a handicap, that it would ruin our older son's life, that we would be unhappy. I knew at that moment that I had a fight on my hands. Baby and I went home that day but my husband couldn't bond at all, refused to even hold him. He never gave me a choice thank goodness - him or the baby - and I knew that I would never have given our baby up for adoption. Then we had a breakthrough - my dear husband told me one day that he had realised how selfish he'd been. Our baby was going to be given the best chance of a happy life and from that moment on the two of them (and of course our older son who's 4 years older) have been inseparable.

Well, here we are nearly 20 years later. Our son went to the village mainstream school with support, onto the marvelous secondary school, gained a couple of GCSEs and hundreds of friends along the way. At the end of his time at school he went to the Prom with his best friend and all the other students and staff voted him and his friend Prom King and Queen. It was one of the proudest days of my life. He is now at college 3 days a week attending a Life Skills course and also goes to a training centre run by the Salvation Army for the other two days where he does Estate Management (mending fences, laying paths) on one day and on the other he works in the cafeteria kitchen. He goes to several youth clubs, has a season ticket to the local football team, has the freedom to walk around our village in the knowledge that he is safe and everyone knows and respects him.

From that initial despair has come real happiness and pride. It hasn't been without a few ups and downs along the way. He already tells me that he's ready for "independent living", something they've discussed at college. I've told him he can wait a few more years. He's currently on holiday in Dublin with a group of special needs young lads and three couriers - it's what's called "an assisted holiday" and he's having the time of his life.

I hope my ramblings have been of help to you. I just wanted to offer support from someone who was in the same boat as you regarding our husbands.

I've only just seen this but wanted to give you the link www.kellehampton.com

The birth story she wrote about her second daughter, who has Downs, is everywhere online at present but actually I think the best thing about the blog is the everyday posts and photos on her daughter. It might help your husband to read it. Her daughter is just beyond gorgeous.

Kelle writes all about the everyday realities of having a child with Down's, although she tends to write about the good things for the main part. But having been surprised and shocked at the birth of her daughter, she is now very happy and totally in love with her daughter by all accounts. The blog really shows you that in day to day life, there is nothing to be scared of and everything to be joyful about.

I really wish you well. I'm sure this is all still a shock. I once read a book called 'Expecting Adam' about a mother who has a child with Down's and that was also really amazing. I would recommend it.

Thank you for your replies and sorry I haven't replied to earlier posters. The Holland poem is very good! I have actually been to Holland but not to Italy, so I'm not at all disappointed to hear that's where I'll end up .

I have just ordered the 'Expecting Adam' book from amazon - the summary could have been written for DH and I think I could do with a good read of it too. I can only imagine how I'll feel but I have absolutely no idea. I do get stressed about whether or not he will be badly affected - the latter being far more terrifying for me. Thank you for the blog link - I have seen it but it has reminded me of it and I'd really like to look again.

DH didn't bond with DC2 AT ALL for months and i found myself feeling terribly protective of DS and felt that I'd produced something that had been rejected and was considered unloveable by my husband. It was the worst feeling in the world and I was really unimpressed with DH's attitude to him. I know it happens - it happened to me with DC1 - i just didn't bond but I got on with it and was nothing less than loving and caring towards her and trusting that I would develop a bond with her. As far as I know, no-one knows about that, certainly not DH.

I am in no way blowing my trumpet or dissing people that don't bond with their babies but it's just so crucifying to listen to your baby's father telling you all sorts of negative things about your new baby when you're in no fit state to hear them and then they turn on you too.

Figgyroll - thank you so much for posting - it must have been so so hard to go through that. Your son sounds amazing and it does really sound as if he's happy and very busy!! DH is struggling to acccept that anyone who doesn't have a high flying career can be happy . Would you say that your son is in the 'mild to mod' affected by DS group? What life skills is he learning at college. The prom story brought tears to my eyes!

Sorry I've taken so long to reply. Yes, he is definitely in the mild to moderate group.

At college he has a timetable which includes literacy and numeracy twice a week but the rest of the time he is learning like-skills - cooking, how to handle money, time keeping - things like that. He can tell the time already, reads avidly, manages simple maths. He knows everything there is to know about football and EastEnders. He is currently enjoying his holiday in Dublin (due home today) and has made lots of friends.

I'm sorry to hear that your husband is feeling so unhappy and being so negative towards your baby - it must be incredibly hard for you to deal with. I remember those first few months with our son and how my husband couldn't connect with him until the day he went for a solitary walk and came back with a completely different atittude. We haven't looked back.