An Introduction, and 5 Things about the Biggin Family

Hello! I’m Jo, a 40-something, full-time employed mother to two [mostly] lovely kids, Connie (6ish) and Obi (nearly 4). My husband, Patrick, also works full-time, and we are lucky enough to live in a surprisingly fantastic home in Catford (that’s why it’ll be a surprise to many), Southeast London.

Connie is in Year 1 at what we now know we must call a ‘mainstream’ local primary school – apparently ‘normal’ isn’t acceptable in SEND circles (oooops; you can call that ‘lesson #1’ in disability parenting, if you like) – and Obi now attends an independent SEND nursery which we were incredibly fortunate to have open very close to us a few months ago.

Obi has an undiagnosed genetic disorder which meant his brain didn’t develop properly from day zero, and as a result everything about him is delayed, and we don’t know what he’ll be capable of in life. Right now, he can’t walk or talk, although he’s giving both a good go! All the MRIs and signs show that he’s progressing, albeit slowly, and that whatever he has isn’t degenerative or “life limiting” (medical parlance I wish I didn’t know), thank goodness.

I’ve called this The Disability Disclaimer blog because I find myself adding a ‘but’ every time someone asks about Obi. “How old is your youngest?” they reasonably enquire. “Oh, he’s nearly 4, but he has an undiagnosed genetic disorder, so is more like a baby”. Or “but my youngest is severely delayed, but he’s very happy and extremely cute!”. All these things are true, but I can only feel the need to add the unnecessary small print every time is to try to put people at ease in their reactions. Awkward panic isn’t a good look on most people, it seems.

I started this blog at the suggestion of Obi’s neurologist, who frequently gets asked questions by parents of her patients about how to navigate the world of disability parenting (I’ve no idea if that’s actually what being the parent of a disabled child is called…), from all the logistics to planning for the future, and everything in between.

It will probably end up just being an exercise in catharsis for me, but perhaps it will be helpful to others along the way, too. One massive Disability Disclaimer on some of the practical things we’ll no doubt cover though is that every Borough, County or Country does things differently, and care practices and SEND funding differ enormously across borders.

Finally, there are a few things you should know about us if you’re going to read any further:

1. Patrick and I were never going to be parents to a disabled child. In fact, we’d have taken every test possible to avoid it. We’re not patient people, and we’re not particularly nice people (except to each other, on occasion). Pre-Obi, I once refused to watch the BBC’s ‘There She Goes’ because it was too depressing, and Patrick used to get something in his eye every time Mr. Tumble came on TV (IYKYK!). We were definitely, 100%, absolutely never, going to be parents to a disabled child.

   
   

2. Our family motto is “Celebrate Everything”. This has been the case since well before we were married, and is essentially just an excuse to drink Champagne (or its now frequently superior English equivalent) on a regular basis. But it’s stood us in remarkably good stead since Obi was born, and coupled with a weekly round of ‘What are you Grateful for This Week?’ (introduced to try to stop our daughter from becoming a spoilt brat) it helps us remember that in amongst it all, both our children are achieving amazing things, and we’re very, very lucky to have everything – and everyone – we have.

   
   

3. The NHS is not a religion, and its employees are not all heroes. Sure, we’ve come across some amazing doctors, nurses, specialists and more over the last four years, but we’ve also come across an enormous amount of ridiculousness that comes with being a bloated, inefficient organisation that, were it an actual business, would almost certainly have gone bust long ago.

   
   

4. You won’t find photos of our kids on here. Pat and I both work in technology, and as such are far too aware of the risks of putting our children’s faces online. It’s too late for us, but we’d like their digital records to be clear. Maybe we’ll post some of Connie’s family portraits instead!

   
   

5. The biggest disclaimer of all – we love both our children an immense amount, as is the norm for parents! We joke and we tease and we often indulge in a little dark humour, but that’s what gets us through (along with wine. And vodka.). I don’t need to tell you how much I love Obi just because I also just told you he’s a massive pain in the arse. Same goes for Connie – she’s equally annoying at times, and there’s nothing wrong with her at all! So please, just assume it’s a given – we love our wonderful children, and count ourselves lucky on an [almost] daily basis that we have them, and that it could all be a whole lot worse.

So, here we are! Welcome to our lives – we hope you enjoy the ride!