October 28th, 2017



A question that was asked yesterday was 'what can we do to support you as a family, or Emma?'
Firstly, you need to remember that we are just the same as any other family. All children have things that they will struggle with, regardless of whether they have a diagnosis or not. All parents will want to talk about their kids' struggles and successes, and usually all they want is for someone to say 'me too' or 'that's so cool'. High five for friends who listen, empathise, relate, and celebrate!
Emma might need a bit more time to work things out.. so if you're expecting that at a certain age she'll be doing certain things, you're going to need to throw that out the window. We have! There are some things that she's behind on, but there are others that she is the same or ahead of her peers. Don't assume that she CAN'T do something - always assume that she can.
Speak to Emma first, if it's a question for or about her, just like you would anyone else. I'm her mum, but I don't speak for her. If she doesn't want to do something, she'll either hide her face or wave you away with her hands... so respect her boundaries and don't force her to do things (unless of course it's related to safety).
We do have more appointments than a 'normal' family, but not as many as I anticipated. We don't spend hours a day doing therapy, but we do play a lot (informal therapy) and try to keep to a loose routine. Sometimes this means that I say no to social engagements because they don't suit our schedule, but it doesn't mean that I'm too busy to see people or want to keep Emma hidden away. She does need her sleep to recover from difficult physical stuff and I try to let her sleep at home so that her sleep is good quality - she does enjoy a nap in the car on a long trip which is also handy!
Dave and I also have interests and sometimes like to spend time alone together or out and about without her - just like you! Emma isn't always with me, or us, but she is always well cared for. Dave is an exceptional Dad and is very capable of being left alone to care for Emma - it shouldn't be a shock if I'm out and he's home with her!
Finally, there is an organisation that supports us formally, with education and advice. They've been supporting us since before Emma's diagnosis was confirmed, and I wouldn't have the positive attitude I have today without them. If you're looking for somewhere to donate some $$ to this Christmas, please consider Down Syndrome Victoria. They're currently working on a number of important projects and the one that hits home for me is an outreach program in every Victorian hospital - so that everyone gets the amazing support that I did when they receive a diagnosis (or suspected diagnosis). Currently we're very well supported if you 'know someone' but in country areas or areas where there aren't people who know people, it's often quite some time before families are connected with support. It's a different road to be travelling and when you're travelling alone it's daunting. Down Syndrome Victoria want to change that.
Well that was all a bit longer than I anticipated... here's a cute pic of our girl to lighten the mood!!


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