World Down Syndrome Day 2020

Nothing is currently as expected.

Today we would have been attending a party with other local families who have someone in their life with Down syndrome. Just a couple of weeks ago, I thought we’d carry on as normal… but the Coronavirus has stepped up and moved on and now the schools in the UK are closed, everyone (who can) is on work from home mode and all parties and gatherings have been cancelled.

To say the times we are living now are bizarre is an understatement.

Audrey has an educational health and care plan, which does actually mean she could continue to attend school, however, since her brother Rex’s preschool is closed and Ted and I are able to work from home, we would much rather have her with us.

And so here we are, “social distancing” is our current mode. Staying at home, perhaps popping out for some fresh air, but avoiding group meet-ups and physical contact where we can. We hope to Face-time and stay in touch with friends and family as best we can. We hope Rex won’t climb the walls (and us) too much.

The biggest stress for me by far (yes, above the thought of catching the virus) has been the pressure (social media, friends chats etc) focused on homeschooling and activities. Everyone is being extremely helpful sending links, resources, accounts to follow, apps to download, things to print… I cannot fault people for trying to ensure we can all help our kids learn, but what it results in is a seemingly mountain high pile of stuff you feel you have to do. I am overwhelmed by the thought of doing my actual job (communications for a charity), doing my mum job (entertainment, food, referee, wiping bums etc) and now being their teacher! It feels like too much to handle on top of the fact that all four of us will be at home together for months. Even if we get to escape the house for fresh air it will be short lived and it won’t really be with other people. Intense!

There is a funny part of me that thinks “you wished for this”! Because often in the mornings, during the stressful period of “Put your shoes on, Where is your book bag? Don’t take your coat off! Please can we get in the car now?”, I find myself wishing we didn’t have to do that morning routine 5 days a week.  Now of course I am desperately sad that I don’t know when we’ll do that routine again.

Anyway, bringing it back to today… World Down Syndrome Day raises awareness (and funds) for various charities relating to DS, there will still be a lot of online campaigns and videos. The central campaign involves “lots of socks” which I (and many others) actually don’t like! It gets confused with odd socks (for anti-bullying) and muddies the water to “we are all different” when we are often striving for people to understand that having DS doesn’t make you so different to typical people.

I mentioned in my Instagram feed this week that I actually learned something about Down’s syndrome this week thanks to COVID-19: I have pretty much consistently told people throughout Audrey’s life that “people with DS have a weak immune system” , but once this all kicked off I decided to fact check. Actually, it’s just that people with DS are prone to certain conditions (relating to their heart or lungs) and it’s those underlying health issues that can cause compromised immunity. So basically, Audrey is fine because she has no health issues. Plus (major plus), she has my immunity passed on from breastfeeding, yay!

 

Down’s syndrome Awareness Month 2019

Whenever the Down’s syndrome awareness days/months/campaigns come around I generally feel like I’m banging on about the same old stuff, it’s all been said before and people are wondering why I’m still doing this.

I will never tire of writing about how great Audrey is and that’s a fact. Beyond that, when I try to think what the Down’s syndrome community wants to achieve with awareness campaigns, I remember why it’s important to keep banging the drum. Because surprisingly not everyone knows that people with Down’s syndrome can live a full and happy life. That they can achieve and learn and contribute to society. We may be very early in our journey (Audrey is only 6), but she is continually learning, progressing and she is full to the brim with love and kindness. She is an asset to our family, not a burden.

9 out of 10 women in the UK who receive a prenatal diagnosis of Down’s syndrome choose to abort. Would the stats skew so high if perceptions of Down’s syndrome and disability were changed?

We are (supposedly) living in a liberal and inclusive world, yet I continue to encounter those who fear disability or don’t fully understand it. Hey, I’m not perfect and I’m learning on the job, but I’ve had some uncomfortable conversations with people, even though they are aware I am the mother of a child with “special needs”:

A mother I know once chatted to me about her 10 year old daughter’s friend who is autistic; “She wants her to come for a play date and I’ve said no and I don’t know how to explain to her that we don’t know how she might react to certain things…”. I would absolutely hate to think a parent might not have Audrey for a play date through fear of her condition, I would much rather they suggested a play with me there (to see how things go) or asked me directly if she might be able to come for a play and if so, if there is anything they might need to know. In any case, a mother of a child with extra needs wouldn’t just pack them off for a play date without knowing that they will be ok. If anything, I tend to be overly protective about Audrey and her abilities, she often surprises me with what she can do independently. I wish I had said all this at the time, but I was so stunned that she was telling me this, I didn’t say anything!

Another example from a couple of years ago, I had a chat with a dad about about how fab CBeebies is at inclusion and he really didn’t get my stance, his response was along the lines of (eye rolling): “Yeah they’ll always get an ethnic kid in a wheelchair in there”, it felt very much like “the world’s gone PC mad!”. Again I wish I hadn’t stayed silent. Because every time you eye roll at a disabled child/same sex parents/family of colour shown on TV, remember that those of us represented by that “shoe-horned difference” are not eye rolling, we’ve got a fuzzy feeling inside. We get to feel like we matter enough to be included with all the “typical” families. People will start to realise that disabled people live in the real world too, with families, jobs and hobbies just like everyone else.

I am absolutely thrilled to say that Audrey is going to be in a TV advertisement over Christmas on Channel 4. I’m not even sure that the team behind it know how much it means to us and the Down’s syndrome community that she was chosen. In it, she’s a little girl opening a Christmas present. She just happens to have Down’s syndrome. And when I’m hanging around with her in a big house in London watching her being filmed it’s just another crazy thing Audrey has gotten me into! Audrey having Down’s syndrome has opened doors, not closed them!

I’ll be posting on Instagram (as usual) for Down’s syndrome awareness month. I am no expert on Down’s syndrome (medical stuff, facts about how the condition affects each person – I’ve read minimal amounts to be honest), but I’m an expert on my kid. If you’re looking for a poster girl to explain how Down’s syndrome can make you adorable, kind, thoughtful, stroppy, stubborn, loud, quiet, easy-going, challenging, clever… well Audrey is the one! If there’s one thing I’d want people to remember about Audrey or anyone with a disability; it’s quite simply that they are human. She deserves love and a chance to thrive just as much as anyone else.