Written by: Jorinde Berben
Image credit: Jorinde Berben
Whether or not I was going to write this post has been a bit of a struggle. I have 5 amazing children, each wonderful in their own specific way, each very different from the others. Two of those are my own son and daughter, and one of them, my son, is quite a bit more different (neurodivergent) and requires a very specific approach to parenting.
In writing this post, I want to shine a light on the challenges that this brings, but with the understanding that there are also benefits to having a child that thinks and behaves differently from neurotypical children. I’m doing this mostly for myself because, after 8 years, our life together has become the norm and I can easily forget all these everyday moments that take up so much energy. Then I wonder why I have such a hard time working and living the way I see other people work and live (I tend to forget my own ADHD as well which adds to the exhaustion).
I’m also doing this to shine some light on how my family functions on the inside because this is mostly invisible to those around me. So, in describing my life to a degree, I’m not trying to get sympathy or pity, I’m really trying to clear up an image that is now, at best, incredibly blurry, to others but, especially, to me.
My son doesn’t look different from other children. He has no visible disabilities. Sometimes this is a good thing because it allows him to blend in (and he hates being looked at). At other times, this actually makes him stand out more because his behaviour can be so completely at odds with what other people expect of him (what they would expect of neurotypical children his age). It may look like he’s just out of control or non-responsive, or like he’s just used to getting what he wants (which he isn’t).
It also means that people who don’t know us well sometimes think they know how I should be raising my son, and that they can see what he needs (boundaries, a firm hand, tons of empathy, strick punishments,…). And I get it. If I see a child crying on the street I also think it needs a hug and someone to comfort it. If I see a child throwing a tantrum, I may also imagine that it is trying to rebel against a ‘no’ and just needs a consistent approach. In neurodivergent children, however, these behaviours might signal something completely different.
When my child cries, he often won’t be comforted when you approach him. He will run away. Not just a few yards, either. He might run across the street, or in the middle of the street, trying to get away. He is not always safe. When he yells and curses at me, he’s often sad rather than angry, and yelling back at him only escalates things further (very much tried and tested this approach since I am also only, you know, human).
When my son does something that is not okay, he is of course reprimanded. He is not allowed to hurt others, break things or slam doors any more than his sister is. The way I reprimand him, however, is different from the way I deal with his sister. Threats and punishments don’t work. If I say ‘If you’re not upstairs in 10 seconds you can’t play a video game this week’, he’ll respond with ‘I won’t play one the whole month, no not ever again. Promise me I won’t ever be allowed to play a game again.’ This is not a deliberate tactic, but his way to punish himself even more severely than I ever could. Sometimes I don’t know what to do at these moments. I try to distract him, to empathise, to be firm, to take him on his word, to pry for what’s going on underneath. Sometimes one of those tactics works, often none of them work and we’re in for a 2-hour session of yelling, kicking, hitting, pushing, throwing and/or running away. By the end, I’m so exhausted I can’t wait for the day (or week) to be over.
My son knows his mind works a bit differently, and by now he’s old enough that he can sense it, too. Even though I often emphasize the wonders of his brain, and his talents (and his therapists focus on this, too), he often experiences the challenges that come with not fully understanding how the people around you think. He doesn’t understand why they sometimes lie, when a game changes in the middle and everyone seems to get it but him, or why it has to change in the first place. And it affects his self-esteem, how could it not?
So when I discipline my child, I have to do it very carefully, trying to make sure I distinguish very strongly between what he did and who he is, because he’ll mix them up in no time and make it mean that he has no right to live. And at times (many times, I’m afraid), I’m so overwhelmed that I lose my patience, hurt him in some way and am left thinking that I’m only making it worse.
Asking for help is hard for many of us, but for my boy it’s nearly impossible at the moments where it really matters. I practice this with him every day. What do you do when someone hurts you? Where do you go when you’re afraid? He is afraid often and will panic easily. If I’m out of sight (in the next room), he’ll call my name just to check that I’m still in the house. When he takes a bath, he can only relax if someone also stays in the bathroom (or at least walks in and out). I know this seems completely at odds with the kid who runs away when he’s overwhelmed and tells me he’s never coming back again. Trust me, I know.
My son often seems to expect me to just ‘know’ things. It’s perfectly logical that he wants chocolate right now because two weeks ago when he had a banana he also had chocolate right after and said he liked it. The fact that my brain does not automatically reach his own ‘logical’ conclusions is often a source of instant frustration, the messy kind.
There are things other kids can do easily but that are incredibly challenging to my son: being on the playground (too many people), going to parties (too many people), having visitors over (too many people), extracurricular activities, afterschool daycare, hobbies, hearing a ‘no’ (trouble with adapting to unmet expectations), playing with other kids, playing by himself, sensing his own body, labelling his emotions, labelling other people’s emotions, taking an interest in others, getting dressed, trying different foods, watching the road while biking, sensing what ‘personal space’ is, describing symptoms at a doctor’s office (how much pain, where it hurts), sleeping through the night, asking for help, controlling his reactions, guessing what others might be thinking, travel and excursions (not familiar enough to regulate), and more.
As a parent, I know all these challenges, and I am constantly aware of them. If we have a party coming up, I prepare him in advance telling him that there will be people there he does/ doesn’t know. I also prepare myself to leave early if need be. Every moment we can stay is a moment won. Every moment he plays peacefully is a moment I’ve been given to enjoy. Even if I’m constantly aware of how quickly it might change, which in itself is stressful.
My focus on safety (his safety, other kids’ and people’s safety, my own safety) makes me hypervigilant at times. Constantly feeling like you’re responsible for a child that might do just about anything at any moment can turn you into a bit of a control freak (can you blame me?). I sometimes wonder what kind of person I would be if I didn’t carry that kind of stress with me, and when I’ve been out of my family situation for longer times, I do see that person again: calm, relaxed, silly, carefree even. At playgrounds or parties, I sometimes glance wistfully at parents with children who behave in more predictable ways (We have children like that too. I know the difference).
Last night, I finished a book written by a mother of a child with a label. She talked about the difficulty of raising a child with a label, and how invisible those challenges are for the people around us. There are very few people who know the full extend of how my family (dys)functions: my parents (who live here), my partner (who lives here parttime) and my sister and brother-in-law (who visit and stay the weekend regularly). That’s it. That in itself is quite scary to me already and goes to show how isolating it can be to raise children who are one way out of the house and change completely when they are back home.
It is also the reason I am writing this post. To show you that we often have no idea what the struggles are of living with children who are challenging in one way or another. I couldn’t tell you what it’s like to have a child with a physical disability, a child who’s blind or a child who’s severely ill. I can’t even tell you what it’s like to live with another neurodivergent child than my own child. But I can tell you what it’s like to raise this boy, this beautiful, sweet, clever, funny, strong, inventive and, yes, troubled boy. And I really want to. I want to tell you, and I’m quite sure other parents want to tell you too if you care to know. It gets lonely sometimes when you feel like you can’t share the same milestones or achievements. When your child doesn’t get invited to birthday parties and doesn’t want to throw one himself. When you see other kids spread their wings while your child would prefer to barricade himself in with a computer screen.
So that’s what this is. Me telling you what makes it hard, at least part of it (I could write a book about this). And hoping that you will hold it with kindness and compassion, not with sympathy or judgement and that you will realise, above all, that I wouldn’t want to change my son for the world! He’s my superhero!