DownSyn Forum

[BrightLight]

Hi everyone, my nephew was born with Down Syndrome at the end of May this year. I havent met him and its a very difficult situation for me.

I live in the UK, my older sister lives in Australia, we have no other siblings and have lost our parents, we are family, yet our relationship is not straightforward. Anyway, with regards to my gorgeous nephew

He was born at home, my sister had 4 miscarriages before he arrived and it has been a very tough few years for her. She has travelled a lot of her life, mainly living in Australia but returning to the UK to live for a few year periods over the last 10 years - she finally settled back in Australia in 2006 and married at the end of 2007 and started trying for children then.

Anyway, she didnt know until a few days after he was born that he might have Down Syndrome, markers didnt show up during pregnancy and she didnt have an amnio. The midwife noticed his muscle tone, the doctor thought it was 50/50 - the blood test showed he did indeed have extra chromosome.

He is doing well, no need for heart surgery, digestive system good, eyesite good, keeping an eye on his hearing. Some mucus build up in his nose, but overall really great.

Here is the point I need to express, my sister hasnt told anyone. I completely understand her fears etc, she has tried to explain where she is at, but its hard I imagine, feelings and thoughts change on a daily basis and it was a shock and she has thrown herself right into learning and caring for her special boy and to some degree it feels as though she is shutting out other people.

She tends to do this (hence our un-straightforward relationship, she often calls me when things are a bit muddled or really really good and not much in-between - she tends to cope by shutting off in some way).

Anyway, now that nephew is here I am finding this quite hard, the not telling people seems like he is also being shut out from others. She is very much trying to settle in Australia in that she swings from being in touch with people back in the uk and sometimes not. But....there are people here that really care and I know would show such a great attitude to her and baby and it saddens me, not to mention makes me feel a bit odd, that she is reticent about expressing more.

I had a mutual friend visit the other day, we dont see each other regularly, she had seen a photo on facebook and asked if everything was alright. I had to tell her, she was great about it,balanced etc but concerned my sister was not really telling people but equally seemed to see, as I do, that perhaps a little bit of denial helps her get into the flow.

What are your experiences of sharing information about your children withDown Syndrome? I have no doubt peoples reactions are very different and this is something I know my sister has mentioned she finds hard while she finds her own emotions as it were.

Do you advise others to share the information on your behalf? I have prompted my sister to see if she has told anyone, she said she has changed her mind for now, she had some odd reactions in Australia, I am concerned for her - isolation but also that she is shutting others out here, that want to share in her life with or without down syndrome and I almost feel I am being prejudice my keeping a "secret" when people ask after her.

Sorry for the long post - its not easy for me to say it all succintly! Also will say that i have had experience with children and teenagers with Down Syndrome in an educational work setting so know a fair bit but I have a role as an aunty here as well as sharing info with my sister on his develeopment and learning etc, which she is finding her own way with - she is a natural medicine advocate, so although following conventional advice, she is employing lots of complementary treatments for him.

Anyway, I welcome your thoughts.

Sally (UK)

[beckysmum]

Hello it seems very strange indeed that after 5 months your sister has not told anyone and wont let you, it can take a while to take in the news and deal with the shock but to not tell anyone would ring alarm bells for me that she might not be dealing or accepting that your nephew has ds. It must be very hard for you to help her with the distance between you both I can imagine how difficult it must be , you sound like a great sister I hope that with your help she will feel able to tell people, and she will have to adventualy its not something that can be hidden , maybe you could persuade her to let you inform everyone , taking the stress of her. It will surprise her how positively people react.
It is great that he is in good health you must be dying to meet him, take care xx

_________________
Claire & Chris , Mum and Dad to Bethany 05/03/1998 Calum 03/09/2004 Rebekah DS 13/01/2011

[BrightLight]

Hi beckysmum
Thanks for your reply. It is worrying that my sister hasnt told anyone here in the UK and as far as I am aware not many in Australia. Its very hard to know whether she is just distancing herself from the DS or people over here in general.

Either way I am finding it all a bit tricky, the barrier of distance seems to be getting wider I really do wish I was around the corner, particularly now, only because I know that I would be providing some realism and support along with everyday contact with him and her. Its very hard to read what people are feeling when they dont tell you

Thanks for the suggestion I try and encourage her to let me tell people, I am going to do that, meanwhile I may have to break the un-said confidence and tell people if they ask - its just too strange for me not to.

It looks as though I wont meet him till next year, christmas flights are way too expensive, plus I am stumbling a little with the not telling people aspect and will feel better when she does. I am a very supportive sister but sometimes need my own advise or support when supporting her! Reading peoples posts on here really normalises life and its great.

Sally

[Emdad]

I have learned a few things that might be useful to keep in mind:
1> The reality of having a child with DS affects people very differently. Much of it has to do with prior experience, as well as issue with oneself (not selfish) reasons. Typically a great loss of expectations. For many of us, grief over this loss is overwhelming.
2> For me, the two things that helped the most were those (friends, family, and people I'd never met before) who were 'there' for me, honestly, consistently, and over time. Time is the second thing. I changed over time at a different rate than my spouse, about different elements. For some folks here, a DS diagnosis was a speedbump. For others, adapting takes much longer.

From what I read, you are doing the right things. Being available, asking mutual friends who are physically there to check in unobtrusively. . .
As to telling others, I think you just need to use some discretion so as not to jeapordize your sister's trust. Respecting her timing may turn out to be more important in the long run. One of the things that was hard for me were the friends I thought of as close who pretty much abandoned me because of Emma. Looking back with a longer view, I have found some pretty wonderful friends because of Emma. Certain friendships have become amazingly stronger. My family members reside on both sides of this equation.
I can attest that six months can still be very 'early'. My daughter was born where I work, so telling people was not really an issue.
Finally, I can only say one thing that happened to us. Emma is the one that ultimately won us over, no other support, information, or program. Your nephew will be who he is, emerging, and there will be nothing to stop that.
Thank you for loving your sister and nephew enough to work for them.
Jeff

[BrightLight]

Thank you for your thoughts Jeff.

Your comment "Emma is the one that ultimately won us over, no other support, information, or program. Your nephew will be who he is, emerging, and there will be nothing to stop that. " really touched me and is something that I know my sister and myself keep strongly as a belief, whether he had down syndrome or not and somehow the fact he does is a true "test" of that belief in the individual.

Your experiences of relationships evolving is something I am certain is and will happen and selfishly this is probably part of my challenge, how will i be part of their lives in the future. It will evolve as you say.

Its very hard to watch my sister struggle with the expectation aspect, what you say about that is true, she was able to express that early on and it broke my heart (for her) not that Oliver wasnt going to be a joy just the unexpected path to walk. She has moved on from that but we have had a lot of unexpected in our life as a family and in some ways she said perhaps she is best placed to be his parent simply because she has often ended up doing things "differently"

I havent read the book "roadmap to holland" although I relate very much to the concept and I am enjoying reading about peoples journeys here.

thank you again
Sally

[Helen]

Hey up Sally

I just wanted to add my thoughts. When my son Matt was born, I felt the compulsion to tell everyone I met about his DS. It was like I couldn't stop myself, like a coping mechanism.

When Matt was 4 months old, I went to a baby group for children with extra needs and met another mum, Di, with a baby the same age who also had DS, Nadia. Di didn't feel able to tell anyone, except her closest family members, about Nadia's DS. And even the close family, she didn't tell for the first 3 months or so.

I know, for her, it was something to do with the her previous circumstances. Like your sister and her miscarriages, Di went through a lot of grief with regards conceiving and having a stillborn daughter. She just didn't feel able to tell others about Nadia's DS. Nadia didn't have many facial features of DS, and had great muscle tone, so there was nothing to make it look obvious.

Between the ages of 1 and 2 years was when she finally felt able to tell her friends and associates. All I can say is that she did it when she felt ready. I supported her. Her close family and friends, who knew, supported her. But no-one forced her. For her, it wasn't that she couldn't accept her daughter, but she needed to deal with her feelings before she could share it with the world.

So I would say, just be there for her. Though I'd been totally different and everyone knew about Matt's DS, that was me, and how I handled it. Everyone handles it differently. Don't force her to tell, or override her wishes. In time, she should get to the point where she can tell others. And if, this time next year, it's still an issue, then maybe you need to be more firm. Anyway, just my thoughts. Hope it helps

xx

_________________
Helen

Mum to ...
Rachael, Matt - DS & Autism - and Hannah. My gorgeous kids!

[TheBradyBunch]

With all due respect, being the aunt or working with kids who have DS, is much different than being the parent of a child with DS. Sometimes, the last thing a new parent wants to talk about, is her child having a life long disability. It's not happy days and pockets of sunshine. It's hard. It's a hard emotional journey for many of us, and the last thing we need while we are just trying to get through the hour, let alone the day, is people poking and prodding and telling us we should be yelling from the rooftops that our child has down syndrome. If people are asking how she is doing, why do you feel it's neccessary to tell them that her child has down syndrome? That has nothing to do with how she is doing if she appears to be coping well and loves her child. I don't go around telling everyone that I have 6 kids and one with down syndrome. If they ask, I tell them I have 6 kids. I don't always offer the disability up in general conversation, even to people I know. I'm tired of explaining everything to everyone. I spend so much time advocating for him, and reasearching, and trying to help him develop, that I don't always want to talk to everyone about how I feel about it, or even talk about it.

When she is ready, I'm sure she will be more open, but right now, she needs to figure it out for herself. So just be supportive.

_________________
Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS, ASD) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10), Kaitlyn (Jun/12)

"Sometimes the things we can't change end up changing us"

[BrightLight]

[quote="Helen"]Hey up Sally

Hi Helen, thanks for your words and relaying of varying experiences, yes I am sure each and every person reacts and handles things in different ways - reading more from people makes me realise that, just like most things in life, time changes things and adjustments take time

Realising its the distance that is making this harder, I just dont know where my sister is at and my experience is fairly one dimensional, so apart from anything I suppose I am finding it hard to offer the support that I have been.

Her contact and that of her husbands in the last five months has been almost entirely regarding the Down Syndrome and I have supported that and helped when asked with research etc and also listened to the emotional roller coaster which is a bit as you describe - one minute declaring the down syndrome as "not significant" and another time it is everything - I guess thats a reflection of real life.

What you say about loss is almost certainly the biggest factor in my sister finding herself in this situation.

Thanks again
Sally

[BrightLight]

TheBradyBunch wrote:

With all due respect, being the aunt or working with kids who have DS, is much different than being the parent of a child with DS. Sometimes, the last thing a new parent wants to talk about, is her child having a life long disability. It's not happy days and pockets of sunshine. It's hard. It's a hard emotional journey for many of us, and the last thing we need while we are just trying to get through the hour, let alone the day, is people poking and prodding and telling us we should be yelling from the rooftops that our child has down syndrome. If people are asking how she is doing, why do you feel it's neccessary to tell them that her child has down syndrome? That has nothing to do with how she is doing if she appears to be coping well and loves her child. I don't go around telling everyone that I have 6 kids and one with down syndrome. If they ask, I tell them I have 6 kids. I don't always offer the disability up in general conversation, even to people I know. I'm tired of explaining everything to everyone. I spend so much time advocating for him, and reasearching, and trying to help him develop, that I don't always want to talk to everyone about how I feel about it, or even talk about it. When she is ready, I'm sure she will be more open, but right now, she needs to figure it out for herself. So just be supportive.

Perhaps I have come across not as I intended I am not suggesting that just because I have worked with children with DS or am an aunt that I have any "say" or right to choose or interfere with what my sister chooses to do or not to do. If anything I havent drawn on any of my "working" experience as I want to be an aunt and sister foremost and have actually experienced that the main thing my sister does talk about to me is the DS in one way or another.

I am simply trying to care and came here to gain an understanding of what sort of support that might look like in this situation and its different for everyone. The reason I felt I might need to mention the DS was because one person has asked already if everything is ok with him and because rather than it being an "Issue" with others the fact that no-one here in the UK knows kind of excludes a fair bit of support in a way - not just because of the down syndrome, but as a new mother, people care and wonder why my sister has gone quiet. It was more to gain support for her in all ways, as a new mum etc and be part of her life, however small - but I accept your thoughts that she is working it out and best to leave her be, which is what I have done so far really, unless she talks about it.

I guess I do wonder if she is doing ok actually, and whether she is feeling the love that she hoped for, she is working very very hard researching etc and treatments etc that actually I wish the opposite of what you mention about talking about it a lot - I wish to play, smile and have fun with her and her new son and that is what I think is missing from others that might offer that - but they cant because she is busy and immersed (which I quite understand) with the diagnosis - so its a bit of sadness, but as I say, thats just how it is for now.
Sally

[Solveig]

For what it's worth, I'd be nothing but grateful if my family saw me struggle and reached out to support groups, extended family and friends to try and help, just the way you've done.

This isn't about who's entitled to think, feel, tell anyone or be quiet and whatnot because we're parents, siblings, friends or just plain ol' caring people. This is about a sister doing what she can from across the world to do what she can to help.

So, you told a friend that your 5 month old nephew has DS upon being asked if everything is ok. That doesn't mean that you don't respect your sister, or that you aren't sensitive to her needs coping with a newborn and an unexpected diagnosis. I totally agree with you; it will exclude support to try and keep it a secret. This person asked, you gave an honest answer. What else should you have done? Lied???

I strongly disagree with TheBradyBunch on this, and it is my honest opinion that any friend, relative or acquaintance for that matter who's willing to spend time reaching out for advice on how to provide the best support, has their heart in the right place and should be welcomed warmly.

_________________
Mom to:
Jesper 07/23/95 (stepson)
Hanne Torill 06/06/98 (daughter)
Benedikte 04/14/00 DS (daughter)
Mads & Emil 07/05/00 (stepsons)
Svein Atle 05/13/03 (son)

[Amy]

felt exactly like your sister. I didn't say anything to ANYONE about Austin except my closest family. My husband told EVERYONE. So that pretty much kept me from having to do it. I think in some bizarre.. post natal kind of way, I was shielding him from people. Trying to protect this little wounded lamb. He did have serious heart surgery at 7 days old, so when asked.. I just spoke of the heart condition. I enjoyed the taking him out when he was older and having stangers tell me what a healthy beautiful baby he was.. It comforted me and let me store up good memories in my heart for when we would go out in public and everyone sees his extra chromosome on his face. Please understand, I wasn't ashamed of him. I wanted him to have 'normal' experiences. He was taken away from me within 10 hours after birth.. in the Cardiac ICU for 3 weeks.. He was unable to nurse because he bonded to the bottle, unfortunately I didn't bond to the breast pump. He ended up on formula by 4 months old and I was bitter about that. All of his siblings nursed. I felt he had lost so much because of this extra chromosome. Going home from the hospital, bonding with his siblings, sleeping in his new crib and nursery. We both had lost so much of the normal baby/mother bonding time.. that I just couldn't talk about his T21 without crying. And I didn't want people to be sad for us ... for him. I felt in my heart he would have a great future. Different. But a wonderful life ahead of him nevertheless. I didn't want to deal with the looks on their faces... their sadness for us ... their condolences. And trust me.. we got sympathy cards instead of congratulations on the birth of our child.
My husband is in the public quite a bit and he shielded all of those comments.

I think you need to just have patience with her. Ask her what SHE wants you to say to your family and friends in the UK. Maybe she actually (like me) would rather you deal with all of their comments. Some will be wonderfully supportive, but many will be intrusive.. like Why didn't she know? Why no testing? It's amazing to me how people will pry into your life like that.
Anyway, I too think it's wonderful how you are supporting her and your nephew. And forgive us if our comments can seem abrasive or defensive. Your sister, like us, is on a different journey. And we are all at different places in our acceptance of down syndrome and the effect it has had on our child, our lives and the lives of those in our family and friends circle. But rest assured of this, she loves her son. And in her own way she's trying to protect him. The DS isn't going away and as he is her first child, she probably isn't really even seeing the characteristics of DS. Hopefully, she is learning to be a mum and loving her baby just as he is...
And from my perspective ... 7 years later, I even forget Austin has Ds. Sometimes, at a new doctor's appointment.. I tell them his history and forget to mention the biggie... Down Syndrome.

_________________
Keep the Faith, Amy
Mom to Kristin (26) Jessica (24) Rebecca (21) Rachel (16) Sarah (14) Hunter (11) & Austin (7) DS

[TheBradyBunch]

If you are listening to her and talking to her and allowing her to just vent about whatever her current thoughts on down syndrome are, then you are doing everything you can and all you need to. People always want to tell you how you "should" feel, but the emotional rollercoaster many of us take a ride on doesn't seem to care what a mother "should" feel.

I wasn't intending for you to feel unwelcome, so I'm sorry if I came off that way.

I personally only wanted to talk to a select few about what I was going through, and actually my cousin and I became so close while I was going through this. She did what you are doing, and now we are best friends. She was also the only one who actually tried to help me sort through, and understand where I was coming from, and what I was going through. I actually got angry when other people I hadn't talked to on a regular basis suddenly wanted to "reach out" and support me. It's like, I don't need their pity, I don't need their questions, and I don't need to justify feelings and thoughts to them that I can't even justify to myself. I have aunts who all wanted to come over and see the "disabled" baby. They didn't call him that, but they never really cared to see my other kids, they just all wanted to come see him. Part of it is because they were doing what they thought I needed, and trying to support me, but it wasn't what I needed, or wanted. I couldn't stand to be potentially judged by anyone else. I had already heard the "didn't you do prenatal testing?" about a million times before, and frankly I was tired of going through the whole story with people, over and over and over again. Like a broken record. Always the same story, and ALWAYS the same responses.

_________________
Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS, ASD) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10), Kaitlyn (Jun/12)

"Sometimes the things we can't change end up changing us"

[QuinnsMom]

You know what I think is awesome? That you are trying to reach out and learn more about what it may be like being a parent of a child with DS. I wish my sister had done that. Oh about my sister and our current relationship is such a long story

Anyway, when I had Quinn I had a prenatal diagnosis. While I was pregnant I did tell some people but it was on a need to know basis. I really didn't want too many people to know about it. After she was born, I went through this short phase of not mentioning it, but then (FOR ME) I felt awkward about that, like I wasn't really accepting things how I should (AGAIN, THIS HAS ONLY TO DO WITH ME AND MY FEELINGS ABOUT MYSELF). I am a psychologist, so that might explain my introspection. So then I decided why hide it, is that fair to Quinn to be hiding it? We have had other medical issues along the way, so the DS in my perspective has been more minor (but everyone is different on that). It is not like I walk up to complete strangers and tell them, but when I started a new job and people asked about my kids I mentioned it. It wasn't the first thing I said about her, but I did make an effort to include it because I see it also as advocacy, how I respond to it, how I talk about how beautiful my daughter is (who happens to have DS), how excited I am about her, challenges other people to think differently about ability versus disability and contemplate more about unconditional love. I am surprised over and over again how that brings me closer to people than farther away. I think they really see the energy you have about that and feed off of it.

I think the point is that everyone is different, but I do think that what you are doing by coming on here and seeing the different perspectives is AWESOME and shows how sensitive you are. That will go miles.

_________________
Karyn, Quinn's Mom -
Mother of Riley (age eleven), Aidan (age seven) and Quinn (October, 2007 - DS, IS, Stereotypical Movement Disorder)
http://quinnscrusaders.blogspot.com/

[youdontknowJack]

To my mind, if your sis is willing to call you up for advice and questions- which involves you in the scenario- I would say that you have as much right to emotional support as she does. However, I would limit it to those who come to you with concern or genuine caring questions, or the choice few you trust. She does have the right to confront the public in her own time.

Jack is very healthy, and most of the time people just mistake him for a 4-5 month old baby. I have stopped voluntarily giving his age, and unless pressed- I don't offer to talk about it with strangers. They're a grab bag of reactions, mostly on the "pity" end of the spectrum. (though I have to say Amy, no one was as crass as to send us sympathy cards! That takes the prize!)

However, all of our family, all of our friends know about it.
Some people have distanced themselves- some have really stepped up their love and support.


You just being there- if and when-she needs you, is wonderful. I would say that unless her hubby expresses to you concern about her mental/emotional state- that is about all that you CAN do. Would it be possible for you to visit her in Aussie Land?

_________________
Monica Mom of Ayden (10) Zavien (8 ) and Jack (2)

[BrightLight]

[quote="Amy"]felt exactly like your sister. I didn't say anything to ANYONE about Austin except my closest family. My husband told EVERYONE. So that pretty much kept me from having to do it. I think in some bizarre.. post natal kind of way, I was shielding him from people. Trying to protect this little wounded lamb.

Thanks for sharing your experiences Amy, my sister has certainly mentioned the fear of other peoples reactions right from the start not just for herself, mainly for him, she spoke about wanting to see and get to know Oliver before the Down Syndrome and for others to do that too. The protective instinct was there, also for her own feelings, I think she might ask me in the end to tell people over here in England, if it comes up, the same happened when she suffered misacrriages - the distance in where we live means that often its only top line news that people catch up on, so it always seems BIG whatever it is, which makes it harder I think, so perhaps me passing the info on when it comes up is what will come about.

I cannot imagine how it must feel to have been sent sympathy cards! With immediate medical problems to deal with, it must have been really hard to keep balanced with everything. Thanks again for sharing with me.

[BrightLight]

[quote="TheBradyBunch"] People always want to tell you how you "should" feel, but the emotional rollercoaster many of us take a ride on doesn't seem to care what a mother "should" feel.

You express really well some of what I have seen my sister going through and I think its just turning out to be quite hard for me to keep up and know when the rollercoaster is up or down or simply muddled A lot of what she first said doesnt hold true or even what went on last week, which I completely understand, new mother with or without the DS she is immersed in a steep learning curve. I think it must be really hard to hear the pity, sympathy and questions about testing etc,

[BrightLight]

[quote="QuinnsMom"]You know what I think is awesome? That you are trying to reach out and learn more about what it may be like being a parent of a child with DS. I wish my sister had done that. Oh about my sister and our current relationship is such a long story

Thanks QuinnsMom, I really appreciate your perspective on my attempting to connect on some level that acknowledges my sisters situation. Reading your post made me think about how easy it is to muddle what you think you would do or feel yourself in a situation, when of course as you say everyone is different. I think its the first time I have played a supporting role in my sisters life where I probably have strong feelings about how I think I would handle things and so its even harder to retain the respect and integrity on all sides at times

[BrightLight]

youdontknowJack wrote:

To my mind, if your sis is willing to call you up for advice and questions- which involves you in the scenario- I would say that you have as much right to emotional support as she does. However, I would limit it to those who come to you with concern or genuine caring questions, or the choice few you trust. She does have the right to confront the public in her own time. Jack is very healthy, and most of the time people just mistake him for a 4-5 month old baby. I have stopped voluntarily giving his age, and unless pressed- I don't offer to talk about it with strangers. They're a grab bag of reactions, mostly on the "pity" end of the spectrum. (though I have to say Karyn, no one was as crass as to send us sympathy cards! That takes the prize!) However, all of our family, all of our friends know about it. Some people have distanced themselves- some have really stepped up their love and support. You just being there- if and when-she needs you, is wonderful. I would say that unless her hubby expresses to you concern about her mental/emotional state- that is about all that you CAN do. Would it be possible for you to visit her in Aussie Land?

Another great read, thanks so much, nearly all of your responses have popped up in conversations with my sister and I really realise that in "real time" life she is probably getting nearer to a general stance on how she is approaching things - it seems that way anyway.

Great affirmation to not be concerned too much unless her husband mentions more to me, it has been really hard to gauge how they both really are. She is starting nursery with him soon and meeting other parents withchildren with DS, so her world is opening up a bit, its been fairly insular so far. She has suffered from depression before, so I guess I was worried about this, didnt really appreciate in a way that someone (husband) would be the one to worry if need be!!

I would only tell people that I feel would be a positive support who are genuinely caring, thats really how this all came about. People were concerned as things "went quiet" and its getting fairly tricky with some people to just say - all ok, I want to share what I have been doing - so the emotional support isnt there for me really - but this board has helped a lot.

[BrightLight]

I meant to say, I love all your photos, I tried to upload one of my nephew Oliver, but it doesnt seem to have worked

[BrightLight]

Just a little update - your words have been ringing in my ears over the past few weeks, (in a good way) as things unfolded.

My sister has been in a crisis the past week, she had a virus and after that couldnt sleep at all, it was not Oliver keeping her awake, she became really anxious and phone me here in the UK and said she had dreaded being ill and not being able to cope alone, but she had but now was going crazy with no sleep.

The next thing I heard, her neighbour had taken her to the GP for valium to sleep and my Aunty from Perth in Australia was flying out to her - my sister lives in Melbourne. My aunty has been with her for the past week and I have spoken to her husband.

I am not sure if it is the added stress of the Down Syndrome diagnosis or general new mum overload but I am relieved she has finally asked for help and support and hope that she can find a plan to get this ongoing.

Her personality is one of doing a lot by herself, for herself,tending toward perfectionism and I am certain that this makes it harder for her to access services for Oliver and reach out to other mums, with or without experience of Down Syndrome.

I plan to visit early next year and just hope this crisis will be a turning point for her - my remaining family in the UK now know about the Down Syndrome aspect and are thoughtful or my sister and being really loving, not only because of the Downs, it sounds as if they have been waiting (like me) for my sister to welcome people into her world a little.

So it seems little Oliver is bringing people together and I do hope it continues, lots of love to all you parents, thanks for letting me post here