So either you’ve got a diagnosis for your child or you’re on the pathway. You’ve heard of EHCP’s and SALT and a thousand other acronyms that you’re going to become very familiar with. Every family is different so I’m going to avoid going into specifics. What I’m going to do is hopefully give some evergreen advice that will suit whatever your situation.
This is all lived advice. I’ve spent a decade raising my daughter who has both adhd and autism and in the last three years my son who while he hasn’t yet been diagnosed is well on the pathway to it. I’ve also spent well over a decade teaching English to adults who (more often than not) weren’t able to thrive at school due to undiagnosed neurodivergent conditions and as I found out at the age of 35 I have ADHD myself.
Parenting in general is a challenge and parenting a child with additional needs brings with it even more challenges – frustratingly most of them caused more by a world not set up with them in mind than anything. It is survivable and it is doable but I’m not going to lie, it’s hard work.
They’re a lot more than their diagnosis.
On a fundamental level, your child’s brain operates in a way that is quite different from neurotypical brains. They may find sensory experiences overwhelming that others might ignore. They might struggle communicating their needs. They might find something so deeply fascinating that they don’t register their body telling them it needs food or sleep or water. They might be able to explain in fantastic depths and detail something then be totally unable to demonstrate that understanding when in exam conditions with the demands and pressure that it places on them. The things we see as symptoms or even challenging behaviour are often simply the side effects of a brain trying to figure out a way to navigate a world that really wasn’t set up with them in mind.
It’s important to remember that there’s never going to be any sort of cure because fundamentally neurodivergence isn’t an illness. What you’re going to be spending your time doing is preparing your child and giving them the tools they’re going to need to adapt and thrive in the world just like any parent would. The difference is you’re going to need to take into account how their brain works and how different it might be to others.
They’re already meeting you (or their teachers etc.) more than halfway.
We all tend to assume that the fairest way to solve difficulties or problems is when both the people involved are willing to compromise. With neurodivergent children (and adults) a lot of the compromise they make isn’t visible or immediately obvious. This isn’t to say of course that neurodivergent kids can’t be deceptive or badly behaved because of course they can. It does mean it’s important to try and remember what they’ve had to do simply to get to this point. Whether they’re having a meltdown in Tesco’s, getting sent out of class for behavioural difficulties or simply not being able to get out of bed that morning they have already put in far more work to try and fit to the demands put on them than a neurotypical kid would have.
They might have had to deal with an unexpected break in routine (e.g. a missed bus) when that routine has helped them feel safe in their environment. They might have to ignore their body telling them how unbearable and irritating the school uniform they must wear feels on their skin. They might have to suppress an urge or impulse to get up or run around or make noise to sit in class. You won’t necessarily see this so it’s important to bear in mind the compromises they’ve already had to make.
Navigating professionals and advocating for your child.
While the majority of professionals you’re going to deal with in schools, doctor’s, hospitals etc. are going to be good, you’re going to come up against a few that probably think ADHD is a 70’s rock band and got 3 hours training on autism back when it was still called asperger’s.
Even the good ones are not going to know everything about your unique situation. If they’re curious and listen to you and your child then they are more likely to be one of the good ones.
Fundamentally, your child is the number 1 leading expert on themselves. The number 2 expert is probably you and your partner so you’re going to have to advocate for your child if they can’t properly communicate what they’re feeling. It can take a lot of courage to begin with but it’s important to step up and say something if – for instance – someone wants to bring in a plan that you know from experience won’t work or will make things worse.
Milestones are different for them.
The Maori word for autism is Takiwātanga translating to “In their own time and space” and frankly it does a far better job of describing neurodivergence. Your child won’t hit the same milestones at the same rate as others – in fact it’s a key criteria for screening in the first place. Not hitting a milestone often feels like a failure but it’s not. The milestones simply tell us our child might be taking a different path through life. It’s not a judgement on them or you, though we’re often made to feel as if it is.
Their pace is different and it will take them to different places. Viewing it as a failing on their part or your part as a parent is a path towards internalising ableism and does no-one any favours. Take time to celebrate milestones they do reach and take time to show curiosity and explore whatever particular interest takes them and you’ll be far happier.
Find people in the same position and support each other.
You are likely going to find that parents of neurotypical children aren’t going to fully “get” what goes into a day for you or your child. They might be curious, the best of them will even be supportive and understanding but frankly there’s no substitute for lived experience. Finding local groups that specialise in working with neurotypical children will help you find other parents with similar struggles – people you can share tips and tricks with, arrange playdates with or even just vent about just how damn hard it can be.
Make time for yourself.
You’re your child’s anchor. You’re going to be their safe place, how they learn to regulate their emotions or handle unexpected and surprising demands placed on them. You’re going to probably be doing more housework and cleaning, you’re going to find depths of hatred and frustration for forms and paperwork you never knew you had and as many neurodivergent conditions are genetic you may well also be struggling with some of the same traits and difficulties as your child. (Seriously, do take a quick look at the assessment criteria and a think about yourself too – many parents often get their diagnosis shortly after their child!)
You owe it to them and to yourself to be there for them in the best way you can and for that you must take care of your own mental and physical health. Exercise is brilliant, spending time outdoors or however you unwind. You’re going to find a million and one pressing jobs to do every day and they’re going to slowly eat away at the time and space you have for yourself. Make sure you don’t succumb and make sure you protect the time you need to recuperate and return the best parent you can be.
And remember, you have got this.
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