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Here are some suggested organisations that offer expert advice on special needs.

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8 replies

eidsvold · 28/12/2003 21:04

I have just learned that a family I know back home in Australia have had a baby. The little girl was born with Down's syndrome and a heart condition ( i know snap!) They have four (?) other children and I think the news was totally unexpected... a little different to us.

I am in the process of compiling a letter and a little pack to send to them

In the pack I have included
a booklet called 'Just Kids' pics and inspirational stories about kids with DS,

a booklet with positive stories about people with Down's syndrome,

a magazine with our story along with the extract about dd in the DSA Annual Review ( showing her a little older),

A copy of the story - 'Welcome to Holland'

Some other inspirational poetry and stories.

With the inclusions - I have told them to just put them aside and read them when they feel like it. Dh and I did that when we felt we could cope with it.

Any thoughts from others about what I should say or include?!?! Just a bit wary about overwhelming them...... but also wanting to be positive and supportive.....

OP posts:
fairydust · 29/12/2003 14:10

do u have a child with special needs eidsvold?

WSM · 29/12/2003 14:55

Yes, her DD has Downs

Jimjams · 29/12/2003 14:57

Sounds a great idea eidsvold. Do you know of any contacts in Aus? Maybe some phone numbers or websites of local support groups.

norma · 29/12/2003 15:02

How about a cute little babygro and cuddly toy.
Or some baby massage oil.

fairydust · 29/12/2003 15:16

my dd doesn't have downs but she does have cp

i do have a friend who's little ds has ds.

Just rember how it was for u when u found out.

I know when i found out about my dd it was hard to talk to people who were directly involved and i'm not the person to phone a help line.

Just let her know your at the end of the phone/email/letter etc

buy her something that you'd buy any other mother who has a baby -as your probly aware society treats us differnt so it's nice when ours firends treat us normal

eidsvold · 29/12/2003 19:13

a small problem is that they are not friends as such rather acquaintances that attended the same church as us .... I just know how I felt when talking to someone else in the same situation - made it seem a lot more bearable....

Jimjams - my mum said they had looked at websites etc and I have included some that I found helpful - including the one for the DSA of Queensland - where they live.

OP posts:
BluStocking · 31/12/2003 11:44

What is the website Thomcat contributes to?

There is an organisation in the U.K, the Children's Heart Federation supporting parents of any child with a heart condition, which includes a charity especially to support parents with Down's Heart children, the Down's Heart Group. and They also run a free helpline from the u.k 0 808 808 5000, and most of the staff have personal experience of the issues.

Eidsvold, I think that they will be very very greatful for help and contact from someone who has a little experience, so i don't think you should worry that they are 'aquantences' rather than friends. In some ways, it is discovering something like this that can separate you from friends as it is beyond shared or common experience, and it is new contacts with relevant info etc that suddenly become so important. You will be of enormous support to them.

BluStocking · 31/12/2003 12:00

P.S Apparantly the Downs Heart Group can put people in touch with each other and may well have contacts in Australia. Their e mail is [email protected]

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