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AMA
Original poster

I have a child with Downs Syndrome - AMA!

27 replies

WipsGlitter · 08/07/2018 21:05

As it says on the tin - I have an eight year old son with Downs. Ask away!

OP posts:
noseoftralee · 08/07/2018 21:52

What did you make of the Sally Phillips documentary last year?

Annabelle4 · 08/07/2018 21:55

Did you know about it before he was born, or was it diagnosed after you gave birth?

Carecomplet · 09/07/2018 01:04

Does your son have mosaic or full downs?

Do you have other kids, what is their relationship like with your son?

What is a misconception about DS?

Original poster
WipsGlitter · 09/07/2018 07:26

I didn't watch the Sally Phillips documentary. I think part of her intention - to show that having a child with DS isn't all doom and gloom was laudable. I do think it would be sad if children / people with Downs were screened out of society. I am aware though that she comes from a particular religious point of view.

OP posts:
Original poster
WipsGlitter · 09/07/2018 07:27

It was diagnosed when he was born about two - three hours after I gave birth. It was a complete shock.

OP posts:
Original poster
WipsGlitter · 09/07/2018 07:29

He has full downs. He has one older brother who adores him - he accepts him for who he is.

Misconception? Children with Downs are always happy. If you'd seen the strop he threw yesterday over a stick you'd know that wasn't true!!

OP posts:
sleepytiger · 09/07/2018 07:31

Do you worry about the future when you aren't around to care for him? I think this would be the bit that frightens me the most.

Ticcinalong · 09/07/2018 07:35

Does your son attend a special school? A relatives daughter has Down syndrome and is currently supported in main stream school and seems happy and included there, but as she gets older it has been mentioned that a special school may be better for her. My relative is undecided what’s for the best.

thereareflowersinmygarden · 09/07/2018 07:41

How much insight does your DS have into it? How do you explain it to him?

Littleredboat · 09/07/2018 07:44

I guess you can’t know for sure yet but do you think he will ever live independently? And if not, is there any provision where you live for sheltered / group living type accommodation?

SamanthaH92 · 09/07/2018 07:59

Was anything not picked up at the scans during pregnancy that would make them think he had down syndrome? I know they say they can spot abnormallities even if you don't have the screenings x

SamanthaH92 · 09/07/2018 08:03

Also do you worry about the future? I didn't have the screening but its one of my fears that should we have a child with additional needs if something happens to me or partner or both our parents are too old to take on a child with extra needs. X

newmumwithquestions · 09/07/2018 09:20

What would you like me to teach my children about Downs, and children with Downs?

Original poster
WipsGlitter · 09/07/2018 09:42

Do you worry about the future when you aren't around to care for him? I think this would be the bit that frightens me the most.

Absolutely, but I worry about my older child too! I try to cross bridges when necessary so I'm not worrying about that right now.

Does your son attend a special school? A relatives daughter has Down syndrome and is currently supported in main stream school and seems happy and included there, but as she gets older it has been mentioned that a special school may be better for her. My relative is undecided what’s for the best.

He does attend a special school. We used a mainstream nursery school and discussed him continuing there but it wasn't right for him. He has 10 in his class with one teacher and three classroom assistants - mainstream can't match that!

How much insight does your DS have into it? How do you explain it to him?

He has no insight into it at all. I've told him he has DS but he doesn't really understand. He is who he is.

I guess you can’t know for sure yet but do you think he will ever live independently? And if not, is there any provision where you live for sheltered / group living type accommodation?

I don't think he will live totally independently but I think he could manage in supported living. There is some provision where I am including Camphill Communities but he's only 8 so it's not something I'm worrying about now.

Was anything not picked up at the scans during pregnancy that would make them think he had down syndrome? I know they say they can spot abnormallities even if you don't have the screenings x

No, nothing was picked up on the scans. Totally 'normal' pregnancy.

Also do you worry about the future? I didn't have the screening but its one of my fears that should we have a child with additional needs if something happens to me or partner or both our parents are too old to take on a child with extra needs. X

Every parent worries about the future. We have other relatives who could help out.

What would you like me to teach my children about Downs, and children with Downs

That they are children / people with the same hopes and dreams and interests as them. They're not scary. It will just probably take them longer to learn how to do things.

OP posts:
Carecomplet · 09/07/2018 09:59

Does your son have a social worker? How have you found Children's Services?

What support did you have after you found out he had DS? Did you get offered counselling?

roseblossom75 · 09/07/2018 10:20

I have a son with Down's Syndrome too. He's seven.
My question would be were you offered any couselling, particularly in the early years.
I wasn't.

Original poster
WipsGlitter · 09/07/2018 10:31

We don't have a social worker. We had one when he was younger but I don't feel we need one - although that may change.

I have found accessing services for him to be very straightforward - we met his paed when he was six weeks old and we still see her every year for his annual review.

I was not offered counselling.

OP posts:
elliejjtiny · 09/07/2018 10:52

Does your ds have heart problems?

Do you and your ds enjoy meeting up with other families whose children have downs syndrome?

Do you like the welcome to Holland poem?

SamanthaH92 · 09/07/2018 11:12

Did you find it hard to come to terms with?

I love the "what would you like me to teach my child question" i think more people need to understand that they are still "normal" people/children. I hate when people remark about people with disabilities. They didn't ask to have them and they deserve the same respect as everyone else.

sunflowergarden · 09/07/2018 12:49

My friends daughter has downs , her post the other day said it all , extra chromosome extra awesome

I have a child with Downs Syndrome - AMA!
Original poster
WipsGlitter · 09/07/2018 13:40

Does your ds have heart problems?

No he has no heart problems and is generally very healthy.

Do you and your ds enjoy meeting up with other families whose children have downs syndrome?

Not really! We've only got one thing in common so it's a bit forced. We don't - at the minute - go to any groups.

Do you like the welcome to Holland poem?

It's ok.

OP posts:
Original poster
WipsGlitter · 09/07/2018 13:42

Did you find it hard to come to terms with?

Yes, it was very hard at the start. Now I wouldn't be without him. He makes my heart sing with love and happiness and has made me a better mum.

OP posts:
Baumederose · 09/07/2018 13:45

No questions.

Just Flowers

Good for you for making such a happy life for you all.

SamanthaH92 · 09/07/2018 14:02

@WispGlitter Flowers

You are a brilliant mum

DieAntword · 09/07/2018 14:15

Have you ever seen the documentary "Can we get married?"? I found it really interesting.

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