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Please advise, my friend's newborn has Downs and I need to know how best to help.

(26 Posts)
ProtectingMyFriend Mon 09-Jul-07 15:58:10

I'm a regular, but I have namechanged to protect my friend's privacy.

Also, I know nothing about Downs, so please do tell me if I inadvertently say something inappropriately, or should refer to things in a different way. Thank you.

The new baby is their DS2, and he was born on Thursday. I've already sent a present, and will pop round to see DS2 when they are up for visitors. All I know so far is that the baby has been diagnosed with Down's Syndrome.

What I'm asking, I guess, is - what is the best way to react? Obviously I shan't go "shock, how awful" but at the same time, I'm sure I shouldn't play things down too much. My instinctive reaction to the baby himself will undoubtedly be "oooh! cuddle!" but I know she is going to need to talk about everything, and I want her to know that I am taking her concerns seriously, but at the same time, maybe assuage some fears?

Are there any good websites that could help them? What about books?

God, I'm even having trouble composing this post. My main concerns are a) not upsetting her further, and b) being of active and useful help. Her husband is away a lot (we are all military, living on a base) and life is hard enough as it is. Will she need to go for hospital visits with DS2? or even just more time to bond with him? as I can offer to take DS1 for afternoons to give her some extra time.

Thank you for taking the time to read this. Any help is very gratefully received.

magsi Mon 09-Jul-07 16:18:12

My ds1 does not have downs, but has cp. If I were in your position, I would let her 'call the shots' so to speak. Just you being there and offering your help and support in any way is enough. The worst thing I think you could do would be to distance yourself. Your friend will need to come to terms with the news about her ds2 which will take time. Just don't be a stranger and be a good listener. I shouldn't worry about upsetting her further, I am sure she will get upset just speaking about it. I am sure someone will be along soon to advise on some websites, but when your friend is ready, she will find the info she needs herself. Lots of cuddles for baby and mother are needed now. Good luck.

pagwatch Mon 09-Jul-07 16:28:36

the fact that you are even asking the question means that you are likely to handle this pretty well.
Most of those close to me suddenly were absent for about a year after my son developed severe autism - so I would not recommend 'giving her space' as my mum so quaintly put it.
I think the magsi is bang on . Make it totally obvious that you are there and then let her determine how she proceeds for a while.
FWIW i found the hardest thing to cope with the eternal optomists. If I tried to talk to anyone about how bad DS's problems were they would always say yes but he is doing so well, there will be a cure one of these days, you are coping beautifully and he is thriving etc etc. Of course that is all good stuff but sometimes people just spout these things so that they don't have to witness your hurt and grief. I am not being mean I really do understand that comforting instinct but just sometimes it would have been great to just be able to talk about how I felt without others nullifying my comments to ( in truth) make themselves feel better. It is especially hard at the early stages as DH and I just could not talk because it was unbearable to see each other upset.
Sorry - that is really long winded !

ProtectingMyFriend Mon 09-Jul-07 17:29:05

Thank you both for your helpful comments.

I am very wary of being "an eternal optimist" as that is my default setting anyway! and I do not want her to think I am making light of things.

sidge Mon 09-Jul-07 22:51:18

If she is a good friend I would be honest and say to her "I have no idea what to say but I am here for you".

When our DD2 was born with a chromosome disorder (not Down's Syndrome though) some friends didn't even send us congratulations cards at first as they thought it inappropriate . Even through my shock and grief I still wanted people to acknowledge my baby and celebrate her - admittedly traumatic and premature - birth.

I also agree with Pagwatch - sometimes I needed friends to let me rant and rave and cry and see that despite DD2 'doing so well' there were still huge problems - maybe not overly optimistic but realistic!

Hug her, love her baby and celebrate his birth with her

Talkingtot Mon 09-Jul-07 22:53:44

With a friend as sensitive as you .... she's in good hands!!
Lisa x

ProtectingMyFriend Mon 09-Jul-07 22:56:04

Well, I have dropped off a card and a present, and I wouldn't have thought of NOT doing that! I mean, he's still a lovely little baby!

I am and for you that some of your friends felt like that.

I will be supportive and a willing ear, that seems best .

sarah293 Tue 10-Jul-07 08:27:36

Message withdrawn

thomcat Tue 10-Jul-07 10:56:49

Of course he's still a lovely little baby!

You're reaction to him should be exactly the same if he had been born without Down's syndrome.

Don't say things like 'he's still a lovely little boy', or 'apparently they are very loving' etc. Just be yourself and congratulate her etc.

With regard to mantioning the fact he has Down's syndrome, well let her take the lead and go with the flow.

There really are a million wordse things that DS.

A child born with Down's syndrome, is just that, a child, who happens to also have Down's syndrome. It should not define him, it's just a part of him. He's the same as everyone else. He'll do everythign that his older brother will do, he'll just take abit longer getting there. He's just the same as everyone else, he's just got an extra chromosome, nothing missing, an extra chromosome!

She may well go for a period of grieving for the child she was expecting to have and she may have dips where she feels down. That';s natural and just be there to support her. Offer to take him out for an hour fr a walk in the buggy. Don't let her feel that there is anything wrong with having a liitle boy who happens to have DS.

Perhaps you can print off the Welcome to Holland poem, do you know it?

It really helped me and an awful lot of other mums whose children were born with DS.

Lastly let her know that MN exists and when she wants to talk to people who are have walked in her shoes then we're here. Sometimes when you feel down over something just sharing it with people who really =understand is all you need to feel better agin, and we're here for her later on when she may feel the need.

Just now though, he's just a perfect, beautiful new born babt boy. End of. Right now he#s no different to anyone else. Those difference will be there, but not for a while.

Let me know if you need anythihg else, meanwhile here's the welcome to holland poem

eidsvold Tue 10-Jul-07 10:58:18

when my dd1 was born with down syndrome and a heart defect I wanted and appreciated the following:

1. friends and family who celebrated the birth of our first child - who acknowledged that this was our new babe and congratulated us.

2. friends who were willing to listen, willing to let me talk, not turn away if I got a bit teary.

3. people who welcomed my babe to the world who saw her as a baby first who just happened to have down syndrome.

4. To continue to be there for us as we faced our 8 week old babe having open heart surgery twice in the space of three days and very rough recovery period.

5. friends who continue to support and champion us as parents and dd1. Who value her place in their life

6. who accept her diffult days and all - iyswim.

7. who admitted they may not know anything about down syndrome, who off their own back sought out information so they were informed. We were lucky we had three families that we had encountered and two of whom were friends that had members for down syndrome and so we were aware of the ups and downs. Another friend contacted her local down syndrome association to learn more about down syndrome and in particular dd1's type of heart defect.

8.who cooed over her, who played with her when they came to visit.

offering to take the older child will be a help just to give her some space to enjoy the baby - as we all want to do with any of our newborns. Making some meals and popping them round for the days when she has had a tough day - as we all do with newborns.

she may need to attend some hospital check ups. I know the hospital where dd1 was born and dd2 would have been born had we stayed in the UK have a protocol for checking out possible health issues that can arise with down syndrome - eg. heart defects. So offering practical help there of coming with her if her dh is away or having the older one so that she does not have to take him to an appt if she did not want to. We were lucky that dd1 was our first although I now have two other dds to take to dd1's appts.

sorry realise this has turned into a long post but I hope it helps. Fwiw - what a wonderful friend you are and even if you do inadvertently put your foot in it - I am sure your friend will see that your intentions are good iyswim. In a situation like this that is one lesson you learn very quickly.

websites for info:

UK down syndrome association

another thread on the same thing

hope that all helps.

LittleLupin Tue 10-Jul-07 11:06:15

Thank you all for your advice and help. It is really really useful. I'm going to print out that Holland piece, I like the sentiments very much.

And I'm going to go and make them a lasagne right now!

There is a rather gorgeous little boy who goes to our toddler group who has DS - if it wasn't for the facial characteristics, you would not know. He is bright, lively, funny - he behaves exactly the same way as the other 3 year olds. He has certainly made me realise that, as ThomCat says, there are a million things worse. My friend also knows him, and I am hoping that she will be comforted by the same thoughts.

LittleLupin Tue 10-Jul-07 11:06:39

Bugger, forgot to namechange!

eidsvold Tue 10-Jul-07 11:09:38

gosh tc you are a quicker typist than I am - must confess was looking over old threads.

if you do a search in special needs along these lines there are a few threads.

here is another thread

thomcat Tue 10-Jul-07 11:22:09

Which expalins my poor typing Edisvold. Been thinking of you a lot recently. Everything OK? I never did work out the yahoo thing so thta's been on my mind. If you want I'm always hapoy to get an email from you.

Sorry for hijack!

pagwatch Tue 10-Jul-07 11:57:40

oooh good point eidsvold! My ASD boy is also DS2 and oldest son did get relegated to slightly second place. Some special time for older sib and somthing to remind him that he is special would have been fantastic.
Eight years on DS1 is a gorgeous boy and we talk about his brother and he is very loving to him and very balanced about the impact on his childhood. But kids can swallow their own emotion when they sense your distress and he acted fine for a long time without being so. He also couldn't talk to us about how he felt because he didn't want to upset us.
I am sure your friends DC1 may well be too young for the 'talking it through' bit but I would love and be grateful to anyone who had given him time and space. I would have seen that as a huge kindness.

anniebear Tue 10-Jul-07 12:17:11

you sound a lovely lovely friend, wish you were mine lol

LittleLupin Tue 10-Jul-07 17:12:24

Well, apparently the paediatricians can't decide if it is Downs or not so they have to wait for blood tests. But I've spoken to my friend, and she's very much of the "well, there are much worse things that could have happened" frame of mind .

Plus I've seen pics of the baby - soooooo cute!

Will blood tests indicate the severity?

eidsvold Tue 10-Jul-07 22:47:39

the blood test determines whether it is definitely Down syndrome and the type of down syndrome.

In terms of 'severity' to use your word - that will still be an unknown - there are lots of factors that can increase the level of impairment - things like availability to resources like physio, speech and occupation therapy, amount of time spent in hospital for health issues etc. So that really is something that will slowly reveal itself. In terms of developmental milestones - the period of time in which most people with down syndrome achieve things is a huge spectrum - a number achieve things - such as walking etc around the same time as children without ds would - some take a little longer.

However most people with down syndrome are able to live independent lives of some degree with some support.

hope that helps.

Dingle Tue 10-Jul-07 22:54:56

No, blood test will only identify which "type" of DS the baby has, if at all. There are 3 differnet types, but only time will tell as to the child's abilities.

At the end of the day, yes early intervention will help progress in some areas of delay but mostly he would have the same needs as any other baby...lot's of love, hugs and kisses and a supportive family who will love him just for being him.

When DD was born, I suspected straight away, Paediatricians advised of their concerns a few hours later and a few days after that blood test confirmed, yes DD did have Trisomy 21. I loved her and bonded with her straight away, my beautiful baby girl...but I just didn't know "who" she was if that makes sense. Five and a half years later, she certainly make herself known!!LOL.

eidsvold Tue 10-Jul-07 23:02:47

Dingle I thought the karotyping can show whether it is standard, translocation or mosaiacism.

this might help lapin.

Dingle Tue 10-Jul-07 23:07:26

Don't know what that is eidsvold!!

eidsvold Tue 10-Jul-07 23:10:50

there are three types of down syndrome - those three I mentioned. I did not know at first until i asked after dd1's blood test. She has bog standard ds.

LittleLupin Wed 11-Jul-07 00:54:50

Thank you ladies. Sorry, I did not mean to offend by the use of the word "severity" - I thought DS was measured in degrees - thank you for putting me right!

eidsvold Wed 11-Jul-07 01:17:41

lapin - not offended by the word severity - knew what you meant but like you couldn't find a word that best described it.

eidsvold Wed 11-Jul-07 01:19:50

you're right people are affected in a variety of ways and to different degrees.

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