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Nine Things Parenting Additional-Needs Children Has Taught Me

Both my boys are autistic, one far more severely so (with pathological demand avoidance thrown in for good measure). It doesn’t define them but it is the reason for this article. As they have struggled, so have I – they adapt to a world not in tune to their needs; I adapt to parenting children who are different, diverse and, at times, challenging.

It has not always been easy, many times I have felt like I haven’t got a clue what I’m doing or what the best option is, or even the least bad.

However, the process has also made me grow immeasurably, in the last few years I have developed far more than in all the decades prior.

This post is about what I have learned, not their journey.

Here’s what being a parent to additional needs children has taught me. I hope much of this can be of use to others, regardless of their own situation.

1) I have become calm.

Let’s get mentions of meltdowns out the way nice and early. My boys, I suspect in keeping with most autistic children, have had meltdowns whereby they have been unable to cope with external stimuli. Meltdowns they cannot control, asking them to ‘stop’ as much use as asking the sky not to rain.

The first meltdowns we experienced were traumatic for all involved, as a parent your child having a meltdown in a busy supermarket can lead to unimaginable stress. You can suffer mini PTSD long after.

I realise now that I became withdrawn, and definitely depressed at times. That was an automatic coping strategy, to almost shut off from stimulus, to have moments of ‘let’s just get through this’ and then ‘thank f–k’ when you’re back home and in peace.

But come through that enough times and calmness and stoicism emerge instead. I cannot be phased. If either of my boys are stressed out by an environment I will of course do what I can to help, but my own stress won’t go up, I will remain fully engaged yet emotionally level.

It is a sense that the external does not matter, but no longer in a bad way. I’m not shutting it off, it simply doesn’t bother me.

Through this, my whole life has improved. I can walk through a busy town without the anxiety I used to have, I can approach speaking to a group of people with the knowledge it will be fine. I know my stuff, I’m witty – nothing bad, in the scheme of things, can happen.

(like me, this person is calm. Unlike me he has biceps to die for and a hairline untouched by time)

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2) I have become braver

Friends from school and university would probably describe me as shy – and I only say probably because I don’t want to second guess, not that I would query their definition.

Either way, it’s not the case any more. I remain on the introverted side of the spectrum, but not afraid of interaction.

I am braver because my kids have to brave, every single day to confront a world that is challenging to them. Things like ear defenders don’t make the world easy for them, they just make it less hard.

Over time it has rubbed off on me. I can confront the world, not step back. The other day, on the school run, I stepped in to stop a man arguing right in a woman’s face (something to do with parking), as others walked by.

‘Mind your own business,’ was his reply, with a swear or two thrown in, poking away at my chest. The bravery and stoicism were there – not confrontational, arms by my side, just standing there with a look designed to say what are you doing? It even crossed my mind that if he hit me, it wouldn’t really matter. I’d get a bloody nose and a story but wouldn’t react. Life would go on.

He walked away.

(the below is not actual footage)

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3) I realise that many people who would see themselves as good, really aren’t

As any parent to autistic children will know, you have the odd moment where your child is distressed in a public setting.

The reactions from others essentially fall into 3 camps.

1 – they try to help in some way – this may even be just to offer a friendly smile.

2 – they ignore what’s going on

3 – they judge

The first is great, the second is absolutely fine. I have often ignored parents and kids in the middle of a moment, by ignoring you’re not adding to the problem. Just leave them to it; the parent has got it in hand.

Even glancing at the scene is fine, we are naturally curious. If you spot a 12-year-old child rolling around on the floor you’re going to glance. That doesn’t make you a bad person.

But you come to realise that others judge and often it’s people who you get the sense would say they’re ever so lovely. They do voluntary work, they give to charity.

Because of the inner calm you develop, the judging actually ceases to matter, unless you think your kids have picked up on it. However, you mentally mark it – I can see inside you, I know what you’re really like, behind the facade. There’s a child here struggling to cope and there’s an adult passing judgement. I know which one deserves sympathy.

Is the woman below nice or nasty? Well, she was the first result when I put ‘nasty person’ into my stock pictures site, so you do the math)

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4) I don’t matter so much

My job, and our job as parents, is to help our kids reach their potential. They have huge potential, but it will remain untapped without intervention.

I subscribe to an idea that they should have a fulfilling job, not just any job (so often you see posts that say about the low levels of employment for those with disability. A scandal, but so too any idea that this is in any way tackled simply by providing low grade, boring jobs). Not a job, a lifelong vocation. Read more on this here (but the font is tiny – I need to sort my blog out… )

I have things I want to achieve still and ideas for fun and recreation, but my potential is nothing compared to theirs. My eldest can produce truly unique art, our younger son so obsessed with coding, animation and Scratch that his primary school uses him to help teach those lessons.

I’m not going to achieve all that much and I’m fine with that, but they might and so that’s where my time is often best spent.

The overall utility is in helping them and not in being as inwards looking as I once was.

I have also started applying this more widely, for instance offering free proofreading services for local families who have children with additional needs but may be struggling with documents. Where can I put myself to best use?

I am but a grain of sand (my ego demands I point out I mean nice, Italian sand, not the shit you get down on the coast near (town redacted to avoid offence))

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5) I have learnt the value of true focus

I wish I had my boys’ focus. They will both happily work on a task night after night, pushing their learning far beyond anything I could help with – using YouTube tutorials and simple trial and error.

They will focus on one or two things and get really good at them, and they have become self-starters with learning, a wonderful skill that will mean they can tackle any future interests from scratch. They aren’t afraid to learn via struggle. I blog about this here, incidentally.

I wish I had that ability or desire to stick to one or two things and really stick, to go beyond being quite good and become truly expert. It is something I am working on though – to push beyond that point where you want to quit.

Focus comes from wanting to do something because it is a passion, and the results are immaterial. They are a natural bi-product. They do their passions not for likes, certainly not for financial reward. They embrace them because they find them fulfilling.

I’m on the path with this one but it’s early stages. How to divorce process from rewards, when that is so often how we are taught to value effort

6) I have developed confidence

When there is something I HAVE to achieve, I will.

I don’t have that confidence with work – I may or may not get new clients, it doesn’t feel make or break to be honest.

But, we had to get our eldest son into a different school – an out-of-area school that costs the local authority a hefty sum per term.

Everything and everyone said it would be hard. Some said it would be impossible.

They won’t agree to it, they will fight at every stage, the stats are against you. Nobody gets in just by asking, the local authority will always take you through several appeal processes.

But I knew we’d achieve it because we had to. My mental state was to approach it knowing that it might take appeals, but that was part of the process – an initial rejection didn’t matter. I studied case law, I read up on arguments and looked at cases from many other local authorities.

We had one sit-down meeting with the authority, after which a letter came back to say we’d got a place. I wasn’t even surprised or overly celebratory, the result was inevitable, this was merely the confirmation.

I believe my kids see the world differently and I do too now. If you focus hard enough on something and believe in the outcome it will happen.

(to get in the mindset for studying case law, this was my desk set-up. You should have seen my chair when I then wrote a blog post for a dentist)

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7) I’ve realised there’s no destination

Your job, your bank balance, your house. It matters, but much less than I used to think.

Life isn’t a journey of accumulation, a better title, a better salary, a bigger house. It is a journey of improvement. The material things can come because of the improvement, but they are not the aim.

I had a glance around the room just now. There’s a decent computer, a fairly new TV, a stereo, loads of books, an old games console. Stuff. None of it brings any sort of response on glancing at it – sure, I’ll use them all at times, but there’s no attachment.

Three things brought a smile to my face.

photo of a stone toger and a stone that holds a pen

The little stone painted to look like a tiger – I made that with my younger son a while back when we did rock painting, it now sits on my desk.

A stone that is perfectly hollow inside and so a pen can stand in it. I found that with my older boy on a riverside walk.

An awful polystyrene monstrosity that just so happens to be the ‘desk tidy’ they made me for father’s day many years ago.

Three items which if I left on the kerb, would either be left to blow away, or kicked down the street – and yet they’re the three objects from this room I’d save in a fire.

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Through having to think less about my career I have realised what actually matters.

8) I live in the moment more

Son number one wanted to try going to church, very much his idea to be honest.

He quickly found the setting overwhelming, but the joy was to be had on the walk back. We pottered around the graveyard and he looked at the names, getting inspiration for his books.

JK Rowling does this, he told me. We spotted a ‘secret’ path on the way back that we had never seen before, and found it took us past an old power substation.

This is a small example of the shift in mindset – there is nowhere I HAVE to be, nothing we HAVE to do (well, generally!). There’s a plan, but plans change and the new reality, the change to the plan can be just as good.

With autistic kids, you still try things, you still go to places but you accept that things might change and that’s fine. That’s much more how I live now – if commitments change, if things fall through it doesn’t really matter. Something else will fill the time, embrace it.

9) I’m less competitive

I was brought up in a family where we were encouraged to play competitive sport and also push for grammar school entry.

With the benefit of self-analysis, I have no doubt I developed an unhealthy mindset where I judged the value of anything I did by whether it was a success. This actually became paralysing at times, I was a decent cricketer, but almost froze when it came to opening the batting for fear of walking off for a duck. I can’t think of any subject I truly enjoyed at school, it was always a process of getting better and better results. I chose my university degree based on what I was most likely to get good grades in, not what I wanted to study with passion.

The problem is you end up not only judging yourself but being competitive at work too. That person isn’t just a colleague, they are someone who will also go for the boss’ job when they leave.

But through parenting boys with additional needs – and I truly believe this has been a key factor – I have either learned that none of this matters, or it has simply slipped away as other priorities have taken centre stage.

I freelance now and am happy to be a team player. What needs doing – I’ll do it. No ego, no sense of anything to prove, just getting on with what needs doing and then clocking off.

That said, our youngest beat me at Fifa the other day. That was annoying.

(this dad is happy because he knows he has at least six more years of easy wins to come)

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10. Err

I’m sure I had a 10th thing, but it’s gone. Knew I should have developed a better note-taking system by now.

Oh well, if this is of any use I may do a part 2 down the line!

Please let me know any thoughts, where you agree or disagree, or other changes you have experienced through your parenting journey.

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