Support for a child with Down’s syndrome?

[loveautumn45]

One of my close friends recently had a baby and received a post-natal diagnosis of DS. This was a huge shock as it was completely unexpected - she had a smooth pregnancy, there were no risk factors, and her blood test for DS came back very low.

Can anyone signpost me to some useful resources / charities / blogs etc that I can share with her when the time is right? I am sure she will do this herself anyway but I also want to educate myself more and be in a position where, as a close friend, I can support her in anyway that I can.

Or, if you have a friend who also has been through the same thing, what did you do to support them?

Hi OP, I too had an of the blue post birth diagnosis. Unfortunately my hospital were dreadful in giving me any kind of support prior to discharge so I was desperate for some guidance.

The most valuable resource I have found is the nationwide charity PADS - Positive About Downs Syndrome. They have numerous Facebook groups for all different age stages plus their website has a huge range of information and support documents. Lots of online courses for later down the line too, like early development, toilet training, Makaton etc.

I also googled to find my local Downs Syndrome support group, which was good for meet ups etc.

It can all be very overwhelming at first. We took a long time to come to terms with it all but our 4yr old now is the most adorable little boy. It does get easier. Sending lots of love to your friend.

Also, we still went to all the same baby groups as everybody else. Just because milestones are reached a little later doesn't mean you should be excluded from 'mainstream' activities etc. Hopefully her Health Visitor will help her out as well.

Thank you @Junibug. That is really helpful.

Lovely to hear your experience too. My friend is still in a state of shock I think but she’ll be the most amazing mum.

I had this too with my son, such a shock at the time and hospital were worse than useless, I actually put a complaint in to try to make sure no other mothers had the same experience.

My son is now a teenager and he’s amazing & very sporty.

The Down syndrome association are a great place to start, also nearly every county in the uk will have local Down syndrome groups to join and meet other parents. Future of Downs is a Facebook group she can join, I have friends all over the world now with children with downs through Facebook. Also as another poster said go to regular play groups as he/she can do everything other children can do just at a slightly slower pace.

Fellow out of the blue diagnosis here (waves to other DS mums!). I didn't feel able to talk about if for a long time. No welcome to Holland poems or anything!

There's lots of stuff / advice on Facebook. Agree about going to mums groups as well.

I follow Baby Brain Memoirs on Instagram - her son was diagnosed with Down’s Syndrome at birth and she often talks about the rollercoaster of emotions she experienced and the shock of the diagnosis, but also the joy of seeing him reach milestones in his own time. You can read her blog here - https://babybrainmemoirs.com/our-handsome-man-has-down-syndrome/.

💐 for your friend.

What an awesome friend you are! Congratulations to your friend. I was in mourning in the beginning. Now, I couldn't be without her. She changed my life for the better.
You sound like you're going to be a great help.

This is a beautiful post. Your daughter is lucky to have you as her mum.

Big congratulations to her! Place marking for now, will write more later. As PPs have stated Future of Down's and the various PADS Facebook groups have been indispensable to me over the past 8 years of our journey. Also look up her local support group on the Down's Syndrome Association website so she can get plugged into her local community when she's ready. We're Buckinghamshire and our local groups are the South and North Bucks Down's Syndrome Groups and Sparkles (for speech therapy, physiotherapy and occupational therapy).

Welcome to Holland is shit and trite by the way. I much prefer the IKEA analogy!

I have a couple of friends with now adult kids with ds, one is at a higher education college, the other works for John Lewis. 2 of my volunteers at work have ds and they live fairly independently with daily visits from a support team. It's certainly a different parenting journey but all the young people I know with ds are lovely individuals and live very fulfilling lives

Something similar happened to my best friend. Though it’s not a bright spot, she had to educate herself on how ds affects the whole body and how her child responds to common illnesses, eg struggling so much more with a headcold. Sometimes she has had to educate doctors as well.

This happened to me (way before noninvasive antenatal testing). I found the Down's Syndrome Association helpful, and the Down's Heart Group (my DC had heart surgery at a few weeks old). Local groups are great - I don't think anything can beat peer support.

My friend found this blog very helpful.

www.downssideup.com

Disclaimer: I have a physically disabled dd.

I'd say the best thing you can do is celebrate the birth of the child as you would any other, but be ready to be led by her and if she wants to cry on your shoulder then let her.

Please don't tell her that your aunt's best friend had a dc with Down's syndrome who did amazing things and no one ever thought she couldn't do anything and everyone thought she was wonderful. Everyone else will say that (my dd is 19yo and people still come out with telling me about their cousin's next door neighbour's grandad. It's meant well, but it really doesn't help.

Don't try to be an expert. Or point out every article on the news that might be relevant. I've been told three times about the same article (that I know is more marketing than truthful) this week.
Let her tell you. Let her lead the way, and don't assume you know how she's feeling.

As a slight alternative perspective to @MargaretThursday (and obviously I don't know the detail of your own daughter's condition) I found positive stories really helpful and comforting in the early days, having been blindsided my daughter's postnatal diagnosis. The consultant who broke the news of their suspicions to us completely medicalised it - emphasised potential heart defects, bowel issues etc (none of which in the end my daughter suffered from) and so the positive, optimistic stuff was a much needed contrast to this truly shitty conversation. And a lot of the kids in DDs support group had heart issues and surgery - again, I think it can be comforting to hear the stories of those who have come out the other side. All these kids now are thriving, despite some very hairy, scary moments in their early months.

Positive About Down's Syndrome has already been mentioned I think but www.downrightamazing.co.uk is another source of lots of personal stories of families who have a range of experiences. Do encourage her to have a browse through when she's ready.

And finally a big YES to the PP who pointed out it's just as important to get involved in all the normal baby groups. In DDs first year, I hugely relished meet ups with my NCT crew, bounce and rhyme at the library, baby signing etc. You don't have to restrict yourself to the SEN world. Baby signing (we used to go to Tiny Talk)) was valuable for a number of reasons - it was a lovely group in its own right, but the BSL based Baby signs are also pretty identical to Makaton so it's really useful to pick up from the start. Your friend's little one will experience speech delays, but signing is an excellent form of communication before they're able to talk. My daughter had around 100 signs by the time she was 3, when she only had a handful of spoken words.