October 29th, 2017

I had another request to answer a few questions so will try to address the ones I can remember offhand without going in and out of the posts on my phone...

Do we have some sort of insurance in case something happens to us so that Emma can access everything she needs (like carers)? Yes, we do. We are so fortunate to have the NDIS here in Australia. It’s an insurance service for people with a disability. Everyone who pays tax pays the premium and everyone who has a disability is entitled to claim against it. Emma already accesses it for therapy, and as time goes on will access it for travel training, social training, and anything else she might need to function as a member of society. It includes carers to take her places or help support her in daily life when she lives independently. It doesn’t mean that you pay for her to go to the movies with her friends, but you might pay for someone to catch the bus with her for a few months until she learns where to get on and off, and how to interact with everyone involved in the process of getting to the movies. It also covers things like overnight carers in a supervised group living situation, the cost of delivery of prepared meals (not the food, just the delivery portion) and other things to make independent living an option instead of state care. It also means that if Emma doesn’t actually NEED any of this stuff, she doesn’t just get it. If she is able to get a drivers licence and go wherever she wants whenever she wants, then she will. She’ll pay for that herself. Like everyone else does. If she can’t get her licence but is able to go on the bus wherever she likes, then she will. She’ll pay for that herself too. It’s certainly a big relief as a parent to know that if anything did happen to us Emma would not be left unsupported, but also that she will be supported while we’re here to be independent. Of course we have the usual life insurances etc to make sure we’re well supported if something happens to one or both of us 😉

Do we know what level of disability she will have by looking at her current progress? No. Can you tell by looking at any 19 month old if they’ll be a groundbreaking scientist or a terrible sports player or an awesome teacher who inspires others? No. We just do what we can to give her the best opportunity to reach her full potential - just like every other parent does with their 19 month old.

Can we use therapies to train her brain to improve? Yes. Emma doesn’t have a brain injury, she has a learning disability, but some of the therapies use the same theories. Crawling on all fours creates cross body connections in the brain that are essential for reading and comprehension. Kids who crawl on all fours are much more successful when beginning to read than those who skipped this crawling as babies. I’m really not fussed that she’s taking her time in walking because these connections she’s reinforcing while crawling like a champion are more important than ticking off a milestone.

Will Emma’s kids definitely have Down syndrome? Emma’s kids have a higher chance than usual of being born with Down syndrome. It’s certainly not guaranteed. If Emma’s partner has Down syndrome then the chance is higher again, but still not 100%.

What do people say that unwittingly hurts? Usually it’s a negative reaction to the diagnosis - ‘I’m sorry’ or ‘that’s a shame’ or things along those lines. There’s nothing to be sorry or shameful about. She’s freaking awesome. Also people who make sweeping statements about people with Down syndrome based on the one person they have met.... just because you know one person with Down syndrome doesn’t mean you know what they’re all like. Emma’s friends who share her extra chromosome are all very different and while they may share some physical characteristics, they are all unique individuals with many things to offer. Like blondes, or people with webbed toes, or people who are blind.... they’re not all the same!