The more people I speak to who have children or family members with Down Syndrome, the more I appreciate quite how hard some people find the news that their child has Down Syndrome. I feel lucky that we knew enough about Down Syndrome not to worry too much. This is the big issue; people don't know enough about what life really is like. They have some vague picture of thick rimmed glasses, ill fitting clothes and bad haircuts, but that was just the 90s, right? It is all outdated and things have changed so much. Society's perception needs to change, too.
What I believe life will be like having a child with Down Syndrome is that it will be challenging, fun, difficult, joyful, exhausting, thrilling, stressful, wonderful - but that is just life isn't it? So far, Frida is pure joy (except for this evening when she was so tired she was sad and a bit shouty) and we are excited to watch her and Ada grow up together. So far, so amazing!
So if you know someone who has been given a high chance that their baby may have Down Syndrome, or have just given birth and received a post natal diagnosis, please do refer them to the wonderful Positive About Down Syndrome private groups. Or ask them to get in touch with me, I would be more than happy to share any information and answer any questions.
Decisions need to be made on the basis of fact, not outdated information. We, and some amazing people that are part of this wonderful community, can help with the what it is like to live with a kid with Down Syndrome. There are loads of self advocates out there, too - well worth finding out from people who actually have Down Syndrome what they think. From what I can work out, most people are pretty happy with their lives!
I decided to post this on my new blog because Glenn has kindly developed it for me, and I am excited to start getting my thoughts and some information out there! It is Accessible and I hope it will grow with Frida. It wont strictly be about her, but will be a place where I can write some of the discussions I have, thoughts and ideas for supporting a child with Down Syndrome and if it helps a few families along the way, then brilliant.
I am working on an introductory post, and am looking forward to sharing information and some of my thoughts.
Hope you enjoy this gorgeous photo of Frida's head (you'll never see her face on here!) on her dad's legs. Taken when she was 3 weeks old by the very talented Emma Gordon.