Jason Kneen Profile picture
Cross-platform Mobile Apps @bouncingfish • Speaker/Author/Podcaster • Radio/TV guest • Contract CTO • Dad of 5, Rosie T21 • Opinions my own • Powered by ADHD.

Feb 21, 2019, 17 tweets

"My child has Down's Syndrome, what should I expect?"

This. 100% this.

Also expect this!

#wouldntchangeathing

Overwhelmed with the replies, likes and comments about this post and thread — and thank you to everyone sharing their own stories and photos here.

A “quick” thread...

1/12

I was totally NOT ready for a child like Rosie. It was a shock when she was born and I’m ashamed to say I didn’t take it well initially.

2/12

Part of that was the matter-of-fact process that happens where you’re bombarded with documentation and booklets and basically “manuals” on “what’s wrong and going to go wrong with your child”

3/12

It’s devastating to hear how your child’s life has already been predicted and mapped out. All children are different — how can ANYONE predict their future?

4/12

Quickly I realised that ANY child can be slow to talk; slow to walk; have learning difficulties, and ANY child can be brilliant and wonderful and amazing.

5/12

Like any child Rosie has been through it — we’d been through febrile convulsions with 2 before Rosie was born, and whilst she avoided that, she suffered badly with Bronchiolitis and was in hospital for a couple of weeks with @binkyboobar in 2015

6/12

Just before Christmas 2017 she was taken into hospital again with the same, but that also turned into Pneumonia— @binkyboobar was with her for the first couple of days but we had a newborn baby and it wasn’t practical to have them all in hospital.

7/12

So, I took over, as I can work from anywhere, and stayed with Rosie over Christmas and New Year — we all made the best of it with FaceTime and hospital visits from family.

8/12

Rosie I and became thick as thieves over that time and watched Moana together many times and EVERY SINGLE DAY — thanks @TheRock for teaching me all the songs :) — Rosie was so brave, and so strong.

This is her, with assisted oxygen, watching Moana.

9/12

She met Father Christmas, and the Salisbury football team and just powered through it — with all the injections and tests and cables and pipes etc. She was amazing and SO brave.

10/12

Soon after she was back to her normal self 😂

11/12

A year later and we had our Christmas at home and together and she continues to enjoy life, every day, and reminds us and ME how fun it all is.

12/12

Still amazed from the responses to this thread including lovely photos of Rosie's extended DS family all across the world.

it's been an amazing experience with a massively, positive response.

Sadly a few negative ones which I won't respond to directly except to say...

1/3

In response to a DM offering a "cure" for Rosie, thanks but there's nothing wrong with her that needs curing -- she's completely perfect.

2/3

To the "man" that said we should "stop breeding subhumans that feed off taxpayers", I agree, and your parents have a LOT to answer for.

Rosie will grow up to be a million times the human you could ever aspire to be.

#wouldntchangeathing

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