ADHD, Autism, Embracing Neurodiversity, Personal Stories

How I try to be a positive role model

Two of my sisters three children have a diagnosis of ASD and ADHD, a thirteen year old son and a seven year old daughter.

I adore these children and am almost like a second parent to them. I know everything about them, the good and the bad, and I also see how much they struggle. My nephew is quirky and funny, impulsive and hyperactive, he’s got a quick temper and becomes distressed easily when things aren’t going as he wants or thinks they should. He is 5ft 10, our ‘man-child’ as we affectionately call him, so when his behaviour does become challenging, it can be hard to deal with him.

His little sister, my beautiful youngest niece, is very very different in her needs. She is anxious to the point of sobbing every time we have to leave her, her teacher is brilliant with her but has noticed lots of new behaviours. She has started to hum when stressed, she flaps when excited, she talks ten to the dozen when anxious and talks absolute rubbish. She also doesn’t sleep, she has become very picky with what she will eat, she has so many sensory needs and clothing and shoes are a massive issue for her. She has a cosy tent at home so she can retreat from the world when she needs to, she drops to the floor a lot which is to do with her sensory processing issues. This can be a challenge when out and about in public places.

As their Auntie and being neurodivergent myself, I try my best to be a positive role mode in their lives. I struggled as a child as I was undiagnosed and I'm just getting to grips with the techniques they are learning as children, at thirty two. Whenever I’m with them, I can be my autistic self, we do all sorts of silly stuff together and my sister jokes that I’m her fourth child! Often if we are in a situation that is anxiety inducing for us, the kids will be losing it and I do my best to remain as calm as I can to show them that it is doable. That we can cope with this in a constructive, socially acceptable way. I try to talk them through it, I ask them what’s making them feel that way, I will tell them how I’m feeling too and together we will discuss what’s scary about it and then guide them through challenging those fears.

If my nephew isn’t coping in public, he will still often cry even at thirteen. He hates it as he feels people are looking at him. When I’m there with him, I back him into a wall or a quiet corner where he will crouch down and let him cry and shout, I shield him physically so others can’t look at him in his distressed state. On occasion, we do get remarks from others such as “That’s not appropriate behaviour for a kid that age” “That’s not acceptable, I would tell him off” Who does he think he is to shout like that at his parent” “That kid’s well and truly out of control, clearly he needs more discipline” When people take it upon themselves to judge, stare or comment, I can’t help myself but shoot some words back at them. I’ll often point out how ignorant and uneducated some people are, how dare they judge when they know nothing of the struggles my nephew faces. It’s because of people like them that he’s in this state in the first place.

Once he’s calm and able to talk about what happened, I make sure he’s ready to continue on with whatever we were doing. We talk about what he could do instead when feeling overwhelmed and often he just needs to go home or sit in the car for a bit.

His little sister however, seems to love days out, she loves to learn about places and the history. London is one of her favourite places to go and has asked my sister and I to take her on a special day out with just her and do an open top bus tour of the city sights! She’s seven! She loves to walk around the city and we end up walking miles but as long as she has enough rest stops to snack and have a drink and a sit down for a few minutes, she’s happy and will continue on and ask lots of questions about what’s around her. She does struggle with the busyness of it and the sounds and smells but it’s like she’s in the zone when we’re there. She seems to shut all of that out and only focuses on the sights around her. She always has to see if the Queen is at Buckingham Palace and loves to watch the chaos of the police shutting the roads and the horse guards going by! However she also struggles with being out and about and it can be a real struggle to even get her to leave the house. She doesn’t like to get dressed so that can be a daily challenge too. I myself spend the majority of my time in comfy clothes or PJs when I’m at home. I try to be a good example by getting dressed and explaining that I too, don’t like to get dressed but I have to as otherwise I would look pretty silly if I went out in my PJs! This always makes her laugh and she will eventually give in and get dressed, but has to wear what she chooses which we let her do as it’s just something she has a little bit of control over which helps her to feel less anxious and stressed.

My niece and nephew have very different needs as do all children and young people. They are individuals and not their labels. Yes they are Autistic and have ADHD and Sensory Processing Disorder but that’s not all there is to them. My nephew is full of facts and figures, he knows a lot about history and things going on in the world, he’s witty and sarcastic and as frustrating as he can be, he’s also super funny. He’s great to hang out with and play board and card games and kick a ball about with. He loves sport and is really into ghost hunter programmes.

My niece is a joker, she will dress up in silly outfits and pretend to be different characters! She cracks us up with the one liners she comes out with and is so painfully honest. She can be brutal with her words at times but she’s only expressing her point of view and doesn’t mean to offend. She can be naughty like any other six year old and can play up, fighting with her siblings, refusing to do as she’s been asked and being deliberately rude.

I do my best to be a positive role model in the kids lives as most people they will encounter day to day are Neurotypical, they don’t understand that their brains are different and don’t always know how to support them or interact with them. I show them that it’s okay to have anxieties about doing things but to give them a go anyway, and there are things we can do to reduce our stress. The kids use ear defenders, fiddle toys, sunglasses and music as ways of coping. I’ve always tried to show them that it doesn’t matter what other people think of us, that it’s okay to be different, it’s okay to not fit in, and it’s okay to have difficult days and big emotions we don’t understand or know what to do with. I will talk to them about the fact that I have therapy, that I attend a wellbeing centre, that I belong to groups and also that I take medication for my mood.

I want them to see that this is a positive thing and nothing to be ashamed of, for me getting help saved my life and I want them to know that I will always be here for them no matter what.

If you have an experience or views that you would like to share, then please get in touch

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