New Mum of Downs Child

[Eliza70]

Hi, I had my DS four weeks ago and when he was born we found out he had Downs - huge shock, lots of tears etc. Am getting used what as happened now, as is DP, but was just wondering if there were any other parents of Downs children on the board and if so do they have any advice for these first few months. We are lucky in that DS doesn't have any other health problems, his heart is fine and he is feeding well (bottle) and putting on weight. I have been in touch with the DSAssociation but am not sure that I am ready to get involved with them yet.

Also, we were hoping to have another child (we also have a son of 2 yrs) but I am now very apprehensive about this - did other mums feel the same?

Thanks

Hi Eliza70, and congratulations on the birth of your DS. I have 3 DDs, and the eldest (4.2) has sn. I think tbh that shock takes a while to wear off.

Congratulations on your baby

I don't have a child with DS (AUtism is our dx) but there ae several mums on here who do,and plenty of good advice and support all round.

Agree with Riv- time,and lots of selfpity and space. Having a baby is a shock anyway- having a dx to contend with as well much harder. Time doesn't stop it hurting but helps you come to termswith a newreality,and then you start making friends in a similar boat and bit by bit....

It's a long road, but not an entirely unpleasant one.

Congratulations on your baby boy. My DD doesn't have DS but was born with a genetic syndrome so I can relate to what you are going through.

Congratulations on the birth of your DS. My son has DS but is adopted so I did not have to deal with the shock of a dignosis and unfortunately didnt have him during his baby years. Agree with what everyone has said so far, take your time. Use whatever support is around you.

And I would dip in and out of the DS associations, literature you are doubtless being being given etc. They can give great support at the times you feel you need it. But sometimes you need some time to focus on your new baby, just as he is, and take him as he comes. Downs is a wide-ranging diagnosis these days, and sometimes you can start to worry about problems others have met which may never arise with your child.

Take care

congratulations on the of your baby boy.
my dd has cp, and it took ages to get over the shock, you need to give your self time to grieve.

sorry "birth of your baby boy"

Congratulations on your new baby! It's great news that he is feeding well and has no heart problems. My daughter has SLD and is now 11 (she does not have down's syndrome).

Take time now to get to know your son and enjoy him. Everything else can wait!

Hi, congratulations on your new baby. My DS has CP from being brain damaged at birth, so I know something of the shock etc you are going through. Sounds like your DS is a healthy little boy though which is great.

I recently read a book called "A Minor Adjustment" which is written by a guy with a daughter with DS and is all about their family coping and coming to terms with it, I thought it was really good - I identified with a lot of the emotions described, might be worth looking for on amazon (sorry have forgotten the author's name!)

Hi, my son who will be 9 next week is down syndrome. We found out after birth, after they found his heart condition!!!
Yes it does take time for the shock to wear off and at times can all come flooding back. With issues we have had with my son and loosing a child previously with a heart condition I chose not to have any more. Also with my niece being downs also helped me decide!!
The first thing you have to remember is you have a beutiful new baby, treat him as any other child and take each step as it comes. It may also help if you can get your head round it (sooner rather than later) to keep a diary of anything unusual, as well as developmental etc. HTH and anything you want to ask etc just let me know. Lastly....CONGRATULATIONS!!!

Congratulations on the birth of your baby. I have a 2 1/2 year old little girl who has Down Syndrome. Its hard to remember those scary feelings I had when she was born now because life is just so lovely with her. But like you i did feel very shocked and was scared about what life would be like. DD has bought us so much fun and joy, she's a really beautiful little girl. I've just had another dd, who doesn't have Downs but i didn't have any of the prenatal tests with her as it really wouldn't have made any difference. Life with dd2 is pretty much the same as dd1 except she doesn't sleep quite as much and we have less medical appointments!

The best advice I can give to you is to just enjoy your baby as you would any baby. I wouldn't look to much into the future and think about what may or may not be because none of us know what our childs futures will hold anyway. Don't worry about getting in touch with any associations just yet, theres no rush just do it when you are ready.

One thing I would recommend is to ask your health visitor if you can have a referral to a service called Portage. They have been an excellent source of support to me and my family. I'm not very good at explaining what they do so here is there website www.portage.org.uk/index.php

All the best to you, i know its hard at the moment just give yourself time to get to know your new little baby.

Hello Eliza70. Congratulations!

I have a little DS who has downs syndrome and I first posted on here when he was a baby looking for other people going through the same experience.

Like you we found out just after he was born and it was a massive shock. Again, like you we have been very lucky, he hasn't got any heart problems and has overall stayed healthy.

It has taken a long time to come to terms with our new life. Not with my DS who is ace but with our life and as others have said, things still knock me down every now and then.

Still haven't got involved with the local DSA and in the beginning, I definately didnt want to. But we have started to meet other families with children who are the same age and who have DS and that has been really good.

Obviously theres loads more that could be said, but just wanted to say hi and also big respect to you for venturing out when your ds is only 4 weeks ( think I was still in a snivelling heap of self pity ). Remember like with your older ds, he wont stay a baby for long so try and enjoy every moment. x

Thanks everyone for your replies. They pretty much echo what the doctor in hospital said; he's just a baby at the minute and we just need to look after him like every baby. We are taking each day as it comes, and I know there will always be good days and bad days.

We live in Belfast so don't seem to offer portage here but we have an appointment with the community team soon and I think we meet a multi-dispilinary team then.

Thanks again.

Hello. I have a 3.5 year old boy, a 2 year old girl with Downs and have just had a healthy boy 5 weeks ago. Understand your caution aout "risking" another child with special needs. We were keen to sandwich our little girl between 2 healthy siblings. Many will tell you not to think about number 3 whilst you are coming to terms with your recent news. I couldn't help but think of number 3. I desperately wanted to feel a "real woman" again as I couldn't quite convince myself that I was somehow inferior to have given birth to a child with special needs.
I also was reluctant to join the Downs groups but when you do - Downs syndrome international, based in Portsmouth is fantastic and offer monthly groups. I would recommend that you look up DLA - disability living allowance. It is money paid monthly by the Government from 12 weeks of age and although the form is a monster 40 pages, it is worth tackling. But - we were told it many times and it is true - just enjoy your baby. first and foremost, our little ones with Downs are babies and little people first.

Congratualtions on your son. The only thing I would like to add is that I have recently stared working twice a week with a child with Downs and he is fab. He is 2 and a half and each session he does something great. He never fails to put a smile on my face and he is a real caractor.

If you don't feel ready to talk to DSAssociation people just keep them in mind.

I am sure your little boy will fill your life with enjoyment.
Enjoy your son.
All the best

Congratulations on the birth of your little boy. My four month old daughter was diagnosed at birth with Downs so I have also been on an emotional roller coaster.

I found my local Downs support group very helpful. We've made friends with other parents with babies of a similar age with Downs and also with parents of older children who have been able to give us advice and point us in the direction of charities that can help in our area. It was very difficult the first time going to the group or phoning a contact name that I had been given but I have found everyone I have met or spoken to really helpful as they understand what you're going through.

All the best to you and your family.

i am the mother of a girl of 23, a little boy of 4 and a daughter of 6 who has down syndrome and autism. i remember the shock and distress when she was born were almost beyond description. i have been on the most profound and obviously personal journey with it, and i would not change any of it. tho i should add that it has been very challenging at times, as with any child. for me, having this beautiful child has been an opportunity to grow and experience things that i could not even have imagined before i had her, and it is a unique privilege. the depth of love, the opportunity to understand a completely different way of being, among many other things. i do think that one of the reasons i reacted so negatively to the birth of my daughter is that i was so profoundly conditioned by society to believe that downs was such a terrible problem that i should have an abortion for it. i really think this is the most terrible social prejudice, so sad and so unnecessary. my daughter has many valuable qualities, amongst which are a loving, calm temperament, beauty, charisma and charm and humour, despite not being able to speak and still being in nappies! (these things to me are peripheral to the joy of her being). in some ways of course having a downs child is like having any other child, but in some unique and amazing ways, having a downs child is an incredible gift... like having a diamond amongst rubies??? as a society, we need to let go of judgement and open our eyes to things that we may not have appreciated before. every child is amazing and special, downs children bring a rare and unique quality inot our lives that we should cherish and appreciate. i hope very much that you enjoy your precious baby. lots of love to you.

Congratulations on the birth of your baby

I don't have a child with DS- my eldest child, now 10 has severe autism and severe learning disabilities. I really identified with shining's post - I too feel honoured to have discovered a world I knew nothing about ( the world of learning disabilities). Good luck and the one bit if advice I give anyone is to seek out people in the same situation it makes all the difference.

Congratulations on the birth of your baby. Nothing to add to all those wise words I just wanted to add my Congratulations & say enjoy those cuddles & the joy a new baby brings.

Hi!

Congratulations on the birth of your baby!

I am also in Northern Ireland. My third son, who will be 6 next month (where does the time go?!) was born with Downs. Like you, we didn't know until he was born. In fact, one doctor had examined him and said we could go home without realising!

It was a shock at first, but maybe made easier as I already had two 'healthy' children. My son did need heart surgery at 6 months, but other than that and having an almost constant snotty nose all winter, is very healthy.

I think maybe you are right to hold off getting involved with the DSA for now in a way. Maybe until you have come to terms with thinsg more. I can remember just thinking of my son as my baby, the Downs didn't really come into it. I found it awkward around other people's children who were older and had Downs at first and didn't relate my son to them. Now I find it much easier, and my son is really just my son and I can honestly say I feel no differently about him to how I feel about my older two sons. In fact, I am pregnant again with twins, and my husband and I both agree that we would not mind one bit if our children were born with Downs, and so have foregone any tests offered, apart from scans.

I am not amember of any DSA over here. I had my son when I was still in England. If you want to, I think you can email me via my profile. If not, give me a shout on here and I willlet you have my email address if you want it. If I can help in any way, let me know. I was very lucky to meet up with someone the same age as me (27) when I had my son, and her baby girl, born with Downs, was only a few weeks different in age to my son. It made a huge difference having a friend in the same situation, and had we met any other way, we would have still been friends.

Thanks again everyone for your support. Shining your post brought tears to my eyes, I love the idea of my little one being a ruby among diamonds!!

I've love to chat more midori1999 but I can't seem to find your contact details.

Hi and congratulations on the birth of your baby boy. I just joined mumsnet today so be patient if i get it wrong. I have a dd who is 14 months old she has ds. I found the first few months incredibly difficult accepting her( there is a 12 year gap with her big bro and she is an IVF baby). I joined a local support group when dd was 8 week old, she was 7 week early so still very tiny, but i just felt an overwhelming need to be with others in the same situation. It turned out to be the best thing i did and luckily i bonded quickly with a couple of other new mums too. I would say allow yourself some time to feel how you feel. Dont put pressure on yourself and just enjoy your ds. Its great that he doesnt have any medical needs neither does my dd. I was in a very dark place 12 months ago and still have moments when i think'why me' but these thoughts dont last very long. I found out about my local support group...well its a 40 min drive through the ds assoc and we still go every fortnight to a development group there. We'd love another child too but not sure bout going through the ivf again. Take care, enjoy your son and remember no pressure.Take 1 day at a time. xxxx

Hi Eliza. Our DS2 has Down Syndrome and we didn't know until after he was born. We are also lucky as he doesn't have any other health problems. We don't live in the UK but just by going on the DSA website & reading bits & pieces from other parents of children with Down Syndrome has been a big help. I'm also on the DS-UK email list. If you tell me your e-mail address I'll send you the link. It's a brilliant list and all the people on there are a huge help and great support.

I can't advise on having another baby as we won't be having any more unfortunately. We would love to but financially we just can't. However, if we were in a better financial situation I'd definitely go for it

Congratulations btw