I remember one summer we had signed our son up for tennis. He was tiny but remarkably good at it. We had arrived a bit early before the end of one session. Watching through the fence, my heart sank into my stomach. We saw our son wandering around the edge of the court, head down, looking for something, anything – alone. None of the instructors seemed to notice. This was not ‘fun’. This was not what we had hoped for when we enrolled him. He said it was ‘boring’. This was long before we understood that was his go-to phrase for situations when he cannot access whatever it is that is going on, when he doesn’t understand what he should be doing and when the cognitive challenges are too much. We took him out of that programme, one of a whole string of summer programmes that didn’t quite fit.
Flash forward to last weekend. We were at the Brain Base, an FASD-specific summer event (OK, one I organised with an awesome team of people) – a full on multi-sensory programme designed for those with FASD. It was time for the slime lab – an idea our son inspired and led last year at the first ever of these “Brain Bases”. But this time something was holding him back. I couldn’t figure out what. He asked me if I would please tell everyone the instructions. While I did that, I saw out of the corner of my eye that he had taken himself off to the side. I felt that heart-sinking feeling again. Even here, surrounded by people who ‘get’ FASD, he was separating himself. The familiar sadness began eating at me even as I was trying to lead this session.
And then I looked closer. Listened harder. Other kids were having trouble with the mixture. He was making his work. The pressures as event organiser/mum were weighing down hard on me: I was fearing a potential disaster if no kids were able to bring home slime as promised and I was worried my son might be on edge and possibly spiralling. I was not entirely sure how I would handle that combination.
I went over to him quietly. He blurted out, “You don’t have the water!” I explained we had pre-mixed the water with borax* (the fairy dust that makes this slime recipe possible). “There is water in there,” I said, over-riding him, not listening as I too often don’t. He was having trouble telling me. He was getting a little upset. “You need the water!” Then I looked more closely at what he was doing. He had been experimenting off on the side. Hands on. He had added some extra warm water to his mixture and was making it work. He had been testing it out, away from the clamour, before telling me.
I realised my mistake. When we were planning and getting the supplies together for the slime session I had verbally told my son what supplies we had and asked if it was everything we needed. It wasn’t until he was there and could see the supplies and was using the supplies that he could identify very quickly what was missing – extra bottles of non-boraxed water. If I had shown him these supplies sooner and not relied on verbal reasoning only, we would have avoided the glitch.
Now that we understood the problem and why everyone only had at that point a gooey mess, we adults quickly supplied extra warm water on all the tables and then I watched our son.
This, this was his moment.
He was the Slime Whisperer. The Slime Doctor. He was going around the tables, helping people get their slime to the right consistency. He had parents, carers and kids lining up to get his help. People were calling out his name. It was chaotic but he stayed cool. He wasn’t gregarious or arrogant, he was determined. His head was down, all focus on the slime and what each mixture needed. It was instinctive and quick. He has, after all, been perfecting this over many years. He knew what I did not.
My heart stopped its descent into my stomach. It went right back to its proper place and I was full of awe. In that moment, the concerned organiser disappeared and the proud mum took over. This journey had taken a long time from a floundering, ostracised kid no one noticed to young leader at the centre of something magic. This moment had been a long time coming.
And of course, it’s not just about slime.
It’s about understanding. I have written previously about how our son used to get into all of the shampoos and perfumes, he’d mix things and we’d get angry. Finally, we gave him his own ‘slime lab’ with items he could use and which we would re-stock from a pound shop. He has spent days, weeks, years getting this right. He has finally in a very physical way learned how to balance the different mixtures. He has learned by doing, finding his own creative approach to a scientific challenge. His natural determination and ability to fixate has worked to his advantage here. It reminds me of a piece by R.J. Formanek, Getting Burned with FASD, where he explains how as a young person with FASD he literally had to experience something before he understood it.
No, it’s not just about slime. It’s also about finding tools for success. We have over time learned that our son needs this sort of input to help him calm. He now will bring some homemade slime when we go out. Or he also likes various putty – which is less messy and a deeper kind of input. Sometimes it’s just Blu-Tak. We had the best car journeys we have ever had getting to and from this Brain Base (four-plus hours each way), because he had a bag full of tools like this that met his sensory needs, things he chose to help him. That’s the key – these were things he wanted, not what I thought he should have. (And we listened to him, didn’t force him to go into the convenience areas or to eat, we let him ‘be’ in the ways he needed to be.)
It’s also about normalising what too often are seen as unusual behaviours. So, yes, a child making a huge mess with shampoos and powders and washing up liquid can be seen as ‘not listening’ and ‘stubborn’ – some might even call it ‘naughty’. But when we look harder at what they are showing us in those moments we can see the need is for greater sensory input, their system is screaming out for tactile and sometimes deep sensory input.
This is a ‘thing’ – if you know a child searching like this then get an assessment from an occupational therapist trained in sensory integration issues. They can give you what is called a ‘sensory diet.’ Our son has always had a need for deep proprioceptive input – the deep muscle sensations you get from jumping or bouncing or deep massages. It helps his system regulate and it ‘grounds’ him. Pushing the wall, wheelbarrow races, pillow sandwiches, burrito blankets, these are all techniques that help him.
Some of my favourite moments of this past weekend were when adults around him started to use the putty too. Sitting in a noisy restaurant is hard for our guy, especially after a long day. I have a photo of him with one of the leaders of the Brain Base, they were both playing with putty while watching a little YouTube clip of something or other. My mother would have been appalled as this is not typical restaurant etiquette – yes, I still have those thoughts rise up in me. But this wonderful adult was making it all right. We have another photo from the car ride home, where he and his auntie are both playing with putty in the car, discussing its feel with the seriousness it deserves. This whole weekend was about getting the adults to join in with their little ones, normalising the strategies, practicing them side-by-side with their kids. It works!
And in our little family unit, we did not had one meltdown or even seriously wobbly moment the entire trip. In my head at this point the proper response would be for the clouds to open with a hallelujah moment. It’s been a long, long decade-plus string of holidays that did not go so smoothly. In this we are not alone. I have been reading in support groups how people are struggling this summer to try to find ways for their families to have time away without the world crashing down. I remember those days. We have been there. Oh yes, we have.
So no, this post isn’t about slime. It’s about listening to our young ones, being led by them and their interests. It’s about finding that thing, whatever it is, that they enjoy (even if it is not something we enjoy) and finding ways to build on that to help them find some self-esteem, maybe even help them develop leadership skills, in the process helping them to know they can help others. It’s about finding tools that work to break down their anxieties and isolation. And yes, it’s about building those spaces if they don’t exist.
If it had been up to me the slime lab would have been a sticky, gooey washout. Instead, it got the highest rating of all the sessions at the Brain Base. He made that happen. I wish you could have seen the smile when I told him that.
*Please note: Borax needs to be used with parental supervision. It can be harmful, including if it comes into direct contact with skin or is ingested. This session used only a pre-diluted weak solution and all involved signed waivers. Please read up and be safe.