How can I support a friend with a new baby who has downs syndrome?

[zoejeanne]

A friend had a new baby girl last week and has just learnt she has downs syndrome. I don't know anyone with downs, and so I know very little about it (as I suspect my friend does, but she will be learning fast right now). I wonder if anyone could advise me on what to say and do to help them, both now and in the future - my first instinct is to say sorry, but I know that isn't right, their little one will give them and teach them things that I will never get from my DD, but despite that it is not what they dreamed of for the last 9 months. As I'm struggling to find the right words, is there any practical help that would be of use? Thanks for your advice

zoejeanne - what a good friend you are! I have no experience of DS unfortunately but have a baby who was brain damaged at birth so know a little about the shock your friend might be feeling. I would have loved to have had a few friends around like you at the time just to do practical stuff - e.g. shopping etc as I really couldn't get myself together at the start. Is this her first baby? If she has older DC maybe you could offer to spend some time with them - I felt my ds was very neglected at the time adding to my stress levels.

I'm sure someone with more experience of DS will be along soon but just wanted to suggest some support you might be able to offer her. Hope she's doing ok.

I would think that the biggest thing right now is that your friend is most likely in complete shock for a number of reasons a) she has a new baby :-) b) her baby was diagnosed with DS.
What she might need most is an open ear and somebody who listens as she goes through the adjustment to a life that she didn't anticipate. Just being there for her is probably the biggest give you can give.

Hi Zoejeanne,

My 18 month year old son has Down's and the first few months are really tough and take a lot of getting used to. Now things are fine and to be honest I relish the challenge of it all. It is cheesey to say so, but as the love for the child grows it makes it all so much easier. Support from friends and family is critical though.

Some advice:

Don't say
"I don't think I could do what you are doing"
"I hear they are very loving."
"Didn't you have an amnio?"

Do:
->Buy extra smart clothes for baby-pay twice as much as you usually would for that extra nice looking dress.
->Pick the baby up, kiss and cuddle.
->Remark on how cute she is (children with Down's are-of course I am biased).
->Comment on similarities between her and other members of the family.
->Offer to escort mother when she takes baby out and about with her (the worst places are lifts and the people most likely to stare/say something are old people and pregnant women). To be honest, most people can't tell for the first 6 months or so. People still comment that my son looks really tired!
->Suggest she contacts a local support group for families of children with Down's. Offer to go with her. She might also wish to consider Portage if the service is available locally.
->Tell her that when people compliment how beautiful her baby is she does not need to qualify it with 'yeah but she has Down's Syndrome'

Get this book for her:

Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives

Best of luck,

Parsley

If she wants to get in touch, here is our blog about our little boy. Sorry it is a little out of date. There are some great links on it too.

harryt21.wordpress.com/

Hope it helps.

Parsley

Thank you so much for your advice ladies, and for sharing your experiences Parsley. I'll take a read of your blog myself as at the moment I am terribly ignorant of downs and it's challenges.

My friends baby is currently still in hospital, in special care, as she is struggling to feed. They expect her to be there for a couple more weeks. Is this normal for babies with downs, or is it an added complication?

I t can be normal for babies with downs not to be able to suck. My son was tube fed but that was also due to his heart condition.
I agree the first 6 or 7 month is really tough, probably depending on any medical problems and prognosis.
I agree just be there for your friend but remember she may need space to breath also. SCBU is also hard as only 2 per incubator with added window viewing. Feels like there's no hope!!
My son is now 10, he started off in SCBU, still has his heart condition plus many more wonderful and not so wonderful issues.

Be there for your friend, and help her do normal things (like coffee in town).

While the baby is in SBCU offer to get her things like nice toiletries, and things her DH etc. might forget. Take her out for a coffee, buy her frivolous mags etc.

Do get her to meet other parents with DS children, especially older ones.

parsley
what great advice you have given.

i do not have a ds children my two look perfectley normal except they are both severly austistic and non verbal.

yes i get all the stares too.

for me i did not want sympathy the poor you syndrome.
empathy is better and also tell your friend its ok to cry .
when autism hit our family it was amazing how many people avoided me.
i was alone, i could of done with some one i could sit down and cry with.

be yourself with your friend so she knows she can turn to you when she is having a bad day .

I work with two teenage girls with Down's syndrome. I support them in mainstream school and for day release to college. I have the best job in the world. The girls have been treated in the same way as their siblings and are wonderfully 'rounded' typical teenagers. Now in year eleven of secondary school, both are about to complete level one of a city and guilds course. I am dreading the day they leave mainstream school!

I agree with Parsleybill! The girls I work with are gorgeous; one a girly girl, the other a tomboy - chalk and cheese! Early on, the parents set up a local network and the (now teenage) kids still meet on a weekly basis for youth club. Both girls attended local nursery, primary and secondary schools and are heading to sixth form college in September!

I am sure it has not been easy at times but these girls are a credit to their lovely, ordinary families.

you could also contact the down syndrome association UK and do some reading up yourself just to arm yourself with knowledge - often people are afraid of what they do not know. It also means she is not having the responsibility of having to educate you - iyswim.

Don't ignore the fact that the little one has down syndrome but don't make it the focus - this is her new baby - what would you do for anyone who had a new baby?

You could access the Australian Breastfeeding association who have a fabulous booklet on breastfeeding children with down syndrome - a very good friend of mine sent it to me when I had my dd1 who has ds. Although I was unable to breastfeed due to her heart failure - it was a very helpful and informative booklet.

There is another booklet you can get called Just kids and it is wonderful I find parents draw strength and encouragement from that book - it is simply a load of pictures/photos of children with ds doing ordinary things - sailing, football, cultural activities etc. So again that may be something you can share with a when you feel ready.

On a practical level - our daughter was in hospital SCBU/ICU for three weeks when first born and so if you want to give practical help - meals that can be reheated when home from hospital. If she has other children - would you be able to take them for her just for a while??

Hi zoejeanne - just wanted to say taht I thought your message was lovely.

My little girl {now 9 months old) has DS and it is a huge shock at first. Every parent reacts differently to the news, but from my experience I would suggest.

1. You're right, don't say you're sorry (or any of the phrases that parsley mentioned)- it's amazing how many people say this and from a receiving point of view it is heart breaking to think that people don't think your child is as perfect as you do. Instead just use the phrases you would for any other new born e.g. "they're gorgeous", "don't they look like xxx" etc.

2. The Down syndrome website has a great leaflet for friends as well as parents on what to expect and how to be there to support the child / parents

3. Finally, and most importantly, just be there for a shoulder to cry on / someone to talk to when she needs it. One of the most difficult things about having a SN child is the feeling of isolation it can bring, so if you can encourage her to take her baby out and show her off like any other mum would and try not to look embarrased or even guilty when she starts to talk about the bad stuff that she has to deal with - in other words just continue to be the sort of friend you've already demonstrated you are

I'd also suggest that you point her in the direction of this website as it really can be a huge source of support on those bad days

Please feel free to PM me if you have any questions

Thank you for all your tales and experiences, I've found them incredibly moving and all so warm and full of positivity and love. Through reading them I've realised a few things:

1 I am sorry for my friends, but only because no one wants to spend the first few weeks of a babies life in hospital and because they can't spend time as a family allowing their older dc to bond with the new baby. Otherwise I am excited and can't wait to meet the baby and I have a wonderful shopping trip for beautiful new baby clothes planned

2 I can help them without being a medical whizz. I love batch cooking lots of food for the freezer and baking cakes, I am an expert at buying trashy magazines and I am skilled at putting shopping away neatly in cupboards, therefore I am the perfect person for the job.

Thank you all for making me realise how easy it will be for me to support them. When I do get to meet the baby I will report back to you all. Thanks again, and lots of love to your own children xx

Zoejeanne, what a lovely friend you are! It makes me so happy to know that there are some good people out there after all!

My 16 month old daughter has Down's, the best thing my friends did for me was just treat me EXACTLY the same as any other new mummy. My world was upside down for a month or two, but when my friends came round it was the usual:

"Is it my turn to have a cuddle now?"

"Shall I put the kettle on?"

"I saw this in the shops and just HAD to buy it for her, she'll look so beautiful in it"

"She looks just like you/she has her daddy's smile"

All the normal things. As oppose to all the not-normal things I was becoming accustomed to like all the appointments, serious doctors, and long-winded terminology!

If I did cry, they would simply give me a hug, and say "I'll get some coffee/wine/chocolate/cigarettes".

It would also feel amazing every time someone told me how beautiful she was. She is a little beaut though.... :)

Ps. And they were, and still are like my bodyguards when out in public!

My litte boy with DS was one yesterday. This year has gone so fast!

I second all that has been said, for me personally sometimes I wanted to talk about it, other times I didn't. Take your cue from your friend. I also wanted to tell my 'birth story' without necessarily talking about the bit when we realised he had DS.

Several people gave me the numbers of families with children with DS. I didn't contact any of them (although I have subsequently made some friends myself who are in the same situation) It was just too soon and I wanted to get to know my little boy without thinking too much about what lay ahead.

Also don't do too much research or tell her what you have 'learnt' about children with DS. My mum is still doing my head in with that, all she can see when she sees my DS is his Downs Syndrome, she still can't see past it - so she is always wittering on about things she has read, or making me teach her Makaton signs. It's irrational I know, but even my sister had to tell her to give it a rest recently when she moved on to her fourth Downs Syndrome anecdote.

She's lucky to have you. TBH my friends were pretty useless and all drifted off after the initial visit. I saw one recently and was telling her how he's got a place in a 'special' nursery and she made an "ah poor wee mite" face. I drew that coffee to a sharp conclusion believe me!

I have a daughter with Down's syndrome who is now 12 years old. The first two years were really hard with lots of hospital visits and specialists coming to the house. I have an older child who found it really tough to deal with all the attention his sister was getting. I hated the sympathy comments too, and especially the ones ' you have been given this child because you're the type of special person who can deal with this' yeuch! Basically we just wanted to be treated like everyone else who had just had a beautiful baby. Good friends came round with coffee and doughnuts and let me talk, cry (or not). I connected with a few other mothers in the same situation occasionally but not all the time as you just want a normal life especially if you have other children to consider. Sometimes I felt I couldn't do it and my saving grace was going back to work part time and having my daughter cared for in a wonderful nursery, where the staff were always enthusiastic (when I was not), brimming with new ideas (when I was exhausted) and just gave me space when I needed it most. My daughter is in mainstream secondary school now, thinks she is 'gorgeous and cool' and has loads of friends. It's not bad, it's just different to what you were expecting, the first two years is a huge adjustment, some say counselling helps but that wasn't a road I went down personally.
Good luck it sounds like you are just what she needs right now.

Oh and her brother is absolutely brilliant with her now!

Oh and do say 'congratulations' - do you know only one person said that to me?

Happy birthday to your DS Wips, I hope he loved his 1st birthday

Supertutor I love it that your DD thinks she is gorgeous and cool, most 12 year olds that I know are shy and self conscious. I'll come back to you for tips on instilling the same sense of self confidence in my own DD when reaches that age

Hi Zoe
my first post! I can't add much to what's already been said from all these wise mums, except that I agree with the comments. I have 2 severely disabled children (Fragile X Syndrome) now aged 12 and nearly 14.
When I got them diagnosed at aged 2 n 13 months everyone was so sympathetic, it was awful. There was me trying to come to terms with it and everyone crying for me. I felt like I should joke to stop them worrying (Buy one get one free etc) but that made it harder and I broke my heart in private.
So just be a mate, her life will be traumatic enough at times as it is, she will need her mates and you sound like a good one to have. So many of us lose friends cos our kids don't do what their kids do, or we can't just get a babysitter like that, or they simply don't understand enough...
Just be there for her.
:)

Unpa I am honoured that your first post is to me I'm sure you'll find as much support on here as I have

Thanks Zoe, we all need as much support as we can get with SEN kids!
My boys are my life (I have 3 older kids too, all non disabled) and I wouldn't change them for the world, but I wish society as a whole would be as understanding as you and would accept our kids with disabilities. It would be one less thing for us to worry about!
TC unpaid carer

Hi
I work in a Portage Service so often visit parents with a recent or (not so) diagnosis. I am always dismayed to see or hear that the parents did not get cards, balloons all the usual congratulations etc. that is typical of a new born arrival. I pick up the baby, coo and chuckle at it, admire the baby - say its adorable and mean it. In other words no difference.
In my experience parents sometimes will talk about the situation and other times will just want to talk about any old thing. She may not want to go out into the world preferimg to stay in the safeness of home - perhaps because of fear of people asking questions or being looked at, other times 'bring on retail therapy'
Don't change - be the friend you always have been, the person she knows and loves.

Parsley I've read your blog about your family and it is lovely. DD had the same play gym as your DS has, and I have a photo of her looking almost exactly the same as him, except she has big brown eyes instead of big blue eyes - gorgeous

Unpa 5 children! Blimey, just the thought of 5 exhausts me, I think I need a lie down But how nice to have a big family, I used to joke as a child that I'd have at least a hundred babies as only having 1 sibling was boring, and secretly I still think I would if I could

What lovely mums you are I would just like to add something for the future. As a mum of 3 adopted D.S. and 2 more with S.N. your special needs children will never do any of the following
1 Mug old ladies
2 Joyride and kill anyone
3 Take illegal drugs
4 Steal from shops (they may however forget
to pay)
and the list goes on!

5 Roll home drunk as lords
6 Run off with a person of dubious background
7 Disappear to the back of beyond to join a commune
8 Get their nether regions pierced
9 Or any other body parts....
10 Demand the latest trainers/clothes etc which cost the earth

And they'll still want to sit on mummys lap when they're 12. I know this to be true as I have flat thighs- younger son weighs the same as me!