Better insight into living with downs syndrome / T21?

[viccat]

Hello all, I am doing my research while waiting for an amniocentesis. Combined screening at 13 weeks has given us a greater than 1 in 5 chance of T21.

I was hoping someone can help me find good sources of personal insight into caring for people with downs syndrome over the long term? I am getting very frustrated as the only people with a voice seem to be those who have relatively mildly disabled children.

I am trying to find personal stories on what it is like living with a more severely disabled child, and what it is like being a full time carer for 30-40 years.....

 

[joeyjo]

what a tough time, you may find some threads in the special needs parenting section

 

[twinkletots]

Hi,
I had my baby 17 weeks ago and she has downs syndrome. My screening tests came back low risk and the 20 week scan didn't show up anything even tho she had a hole in the heart.
We were devastated when we found out about the diagnosis after she was born and thought our life had totally come to an end.We cried solidly for six weeks and never thought we would cope.
Well let me tell you how things change!! She is adorable and we can't get enough of her. Her big sister feels the same. There is a huge amount of support out there and hundreds of kids with downs syndrome that are absolutely lighting up their family's lives.
Are you UK based? I can give you the links to a few great blogs from parents of children with downs syndrome.
I would also say don't get too bogged down in thinking far ahead in to the future. If your baby has downs syndrome, please enjoy them for the adorable little bundle they are as they really are the same as any other baby.
Are you going to get a diagnostic test? Or wait and see?
It feels like scary times but I promise you the reality is not nearly as scary as you think x x

 

[twinkletots]

Sorry just read you are waiting for amniocentesis

 

[kit10grl]

https://lifeisfullfullofsurprises.blogspot.co.uk/

I highly recommend this blog but will say upfront the writer is one of my friends lol. Her twin boys are 8 months old and were both born with downs. It is actually quite rare for both twins to have it usually only one of the set does. She has a really insightful blog here and also if you are on facebook she as a page for them as a public figure where you can follow them that she updates everyday. If you search for Ollie + Cameron it should come up.

She is a firm believer in helping raise awareness of what its like to raise children with downs so she would happily answer your questions if you messaged her.

My DD doesn't have Downs but is also disabled. I have a blog too about our everyday life. There is a link to it in my signature. Feel free to pm me if you wish.

x

 

[twinkletots]

https://lifeisfullfullofsurprises.blogspot.co.uk/

I highly recommend this blog but will say upfront the writer is one of my friends lol. Her twin boys are 8 months old and were both born with downs. It is actually quite rare for both twins to have it usually only one of the set does. She has a really insightful blog here and also if you are on facebook she as a page for them as a public figure where you can follow them that she updates everyday. If you search for Ollie + Cameron it should come up.

She is a firm believer in helping raise awareness of what its like to raise children with downs so she would happily answer your questions if you messaged her.


My DD doesn't have Downs but is also disabled. I have a blog too about our everyday life. There is a link to it in my signature. Feel free to pm me if you wish.

x

Aww, I know Ollie and Cameron! Their mum is on the same facebook page as I am and they are aaaaaddoooorable!!!

There is a closed facebook page for parents/parents to be of children with Down's syndrome and all the people on there are great and any one of them would be more than willing to answer any questions you have (as would I).
X

 

[kit10grl]

They are gorgeous little boys. Lol although not so little these days. They are bigger than my 14 month old skinny girl now. Its funny to see them together these days.

 

[fashionqueen]

I know two people (one child & one adult) with downs but neither of them have a severe disability in that their downs is a mild form.

They both go/went to normal schools, but needed help with speech etc

The adult got 5gcses and now works part time volunteering. She can't live on her own but will be able to live in supported housing.

 

[viccat]

Thanks guys for all the pointers and links....... I really appreciate it

 

[twinkletots]

Let us know how you get on with ambiocentesis either way. Good luck and try to stay calm! Either way, all will be ok x x

 

[minties]

My neice is 19 and has downs. She's fabulous - bright, social, vivacious and extremely kind. She studies, works, writes on facebook, has a boyfriend (well, is on her 3rd now I think!).

She has some heart issues, and is naive, these are really her only 'downfalls'. An extremely capable young lady.

Best of luck!

 

[steph.]

Viccat I dont know what it is like to have a child with down syndrome, but I had a high chance after my 13 week scan too. 1:20 which for my age (27) was really high. I found it quite frustrating too that I couldnt find many stories of what it is really like to live with a child (and an adult) with down syndrome, as most stories out there seem to focus on the higher functioning downs. I did find a few stories written by the mums of downs children who were at the lower end of the spectrum, they were non-verbal, couldnt feed themselves, werent toilet trained...it scared the hell out of me. In retrospect it didnt do any good to read those stories, and I think the best thing I could have done would have been to visit the local Down Syndrome association and meet the children and adults with down's. Maybe there is one near you that you could visit?

I had the amnio and the tests came back clear...no down's. The 20 week scan also showed no problems. My daughter was born 7 weeks ago, and she indeed does not have down's. However, ironically enough, she was born with a cystic hygroma which is common in down syndrome babies and was never picked up on any scans. :/ If they had seen it on the scans I think my chances would have gone up to 1:2 .

Kit10 i read through all of your friend's blog and am in love with her boys. What an amazing mum she is.

Viccat good luck, keep us updated xxx