Donald Rumsfeld famously stated that there are “[…] Unknown unknowns – the ones we don’t know we don’t know” which accurately described my feelings 3 and a bit years ago – the only thing I was sure about was that I knew nothing about what was coming and couldn’t even begin to form the questions I needed answering, let alone work out any answers. As I’ve said before, the day we got Victoria’s diagnosis we were given a stack of leaflets and waved on our way with a cheery “good luck” as if the pack of paperwork in my hand was enough to see us through this journey. It didn’t even scratch the surface and that is a large part of what has inspired these posts. Because we don’t normalise these conversations, they are never had until we need them. And when you are dealing with all of the emotions that come attached to a diagnosis you’re in no fit state to take in new information. A simple analogy is this: before you have a child you generally know what it takes to keep a small person alive and well. You might not know exactly how much it will cost (answer: a lot) or how much energy it will take (answer: a lot) but you generally know that you put milk in the top end, take the green runny stuff out the bottom end and keep the middle bit warm and dry and you’re doing ok.
Now take a sudden* diagnosis of autism. What do you need to know when raising a child on the spectrum? Given it is a spectrum and every child is different, it’s impossible to pre-empt. It’s only with the benefit of continuous hindsight and a lot of luck along the way that I can share a few pointers on these posts but here are a few specifics I would recommend:
1. Find yourself a We Are Beams. If you’re local, Beams themselves are in Hextable but there are charitable organisations all over the country that can provide information and advice. Just having someone to ask: “what don’t I know that I need to know?” can ease a thousand questions from spinning round your head in the early hours.
2. Talk. Seriously, us blokes are terrible at it but the more I have spoken to people about autism, Victoria and mental health, the more knowledge I have gained. “Unknown unknowns” at least become “Known unknowns”! If you’re really lucky, find a group like the Fathers Club Kent so you can talk to people in your position. It’s also useful for sense-checking things such as…
3. Not everything a child with autism does is because of autism. Remember they are children first and they can just be naughty sometimes. It’s too easy to put everything down to autism and it’s something I still need to get better at.
4. Schooling is a challenge. We all want the best for our children so finding the right school, and the right type of school, at the right time is crucial. An EHCP (Educational Healthcare Plan) isn’t always needed to get the placement you want for your child but it will help so get one as soon as you can. But don’t expect it to make a huge amount of difference in the day-to-day education of your child. It should, but it doesn’t.
5. In fact, don’t expect too much from the local authority full stop. They are simply there to find ways to not spend your hard earned taxes on the things that now matter to you and will put every hurdle in the way of them having to pull out the cheque book. Whilst at the same time allowing systemic waste of public funds. It’s always the kids that suffer through their incompetence but that’s unfortunately just the way it is.
6. One of the first feelings you feel on getting that diagnosis is grief. Be prepared for that because it hits you out of the blue. It may sounds strange that the first emotion is grief but naturally your first thoughts swing to all the things that “won’t” now happen. I still clearly remember my first thought whilst standing in the car park after getting V’s diagnosis: “well we won’t be taking Victoria to Disney then…”. In the big scheme of things that really isn’t that important but at the time it felt like a lot of hopes and dreams had just died. They come back though. Different, maybe, but they come back and that grief doesn’t last unless you let it.
7. Take time for you. With any child it’s normal to devote all your time and energy to their upbringing and it’s easy to forget about yourself. Just as your child is more than just autism, you’re more than just a parent to a child with special needs so look after yourself first. You are always told on a flight that in an emergency you put your own mask on first… you can’t help anyone else if you are mentally broken.
8. Don’t feel you need to conform. Or your child needs to. If they are having a meltdown in public, don’t be embarrassed – it’s just part of who they are, and everyone is different. And on the basis of not conforming to societal norms, I’m going to end this list on number 8…!
* The eagle-eyed may have spotted that I referred to Victoria’s diagnosis as coming suddenly, yet previously explained how it took 3 years to get the official diagnosis. By the time of the diagnosis we knew. Other people knew too. Yet when those words were uttered – “Victoria has autism” – it’s like the previous 3 years hadn’t happened and you get smacked in the face with the news like a hammer blow. Be ready for that too if you’re going through the pathway to diagnosis.