Blog Lights

By SB_FASD

When our son was little he would obsess over light switches. Once he was tall enough, he would ‘play’ with the light switches, turning lights on and off and on and off and on and off. Repeatedly, sometimes for several minutes. Fast. Slow. A hundred light flickers. We had one switch that had a dimmer on it. Same deal. Bright. Low. Bright. Low. On. Off. At times these light switches would get pounded if he was dysregulated. (His nursery had to put red stop signs by all the light switches because he did this there too.) When he was tall enough, if we weren’t vigilant, he’d climb up on tables or take a step ladder and redirect those ceiling spotlights that were able to be redirected and he’d try to redirect even those that are fixed. We had an alarming time period where he tried to remove the bulbs from the ceiling lights, experimenting to see if he could replace them with others. Some of our light switches are still broken.

We never did find the right kind of light for his room. Soft night lights would be turned off and rejected. We learned the hard way we couldn’t have a lamp with a bulb by his bed or he’d possibly take out the bulb, or the bulb would get broken. One time a lamp was knocked over and the bulb started to burn through the carpet. Christmas tree lights? Those were a special challenge. Once he discovered that little box with the buttons that lets you put those lights on a manic flashing setting, we were doomed for a few years. He noticed street lights, what kind, colour. It could cause major anxiety if a street light were left on during the day. If we drove to a new town, he’d remark on the different style of street lights.

I guess if I’m honest I can’t say lights traditionally have been a joyful subject around here.

And yet, here we are.

Once we started to better understand our son’s Foetal Alcohol Spectrum Disorder and learned more about the way his brain works, we got better at identifying what these behaviours were showing us. He is so much more aware of lighting than we are, he sees minor flickers. He doesn’t ‘block out’ the lighting, to him it’s paramount – so that cute little colour changing clock we had in his room was driving him bonkers if he’d wake up in the middle of the night. He wasn’t trying to wind us up by rejecting it. His senses are super tuned. When he falls asleep, he needs pitch black in the room. He has to be in control of these things.

So we started by getting him a couple great kiddie Sprida spotlights from Ikea since some of his light fixation paralleled his desire to perform, to create a ‘stage’. We spent a few years rigging up performance stages in our living room, in his bedroom, in the hallway, in our room. One of us would have to hold the lights while another was responsible for filming and controlling music. Sometimes I’d be all three parts and I’d join with the audience of teddies and dolls in cheering as well. It was fun but also always a little stressful – he had such a clear image of what he wanted to have happen, if I didn’t get it right, well, that didn’t always end well. When it worked, it was magic. We had such good times. Some days this would last hours. We went with it.

As he grew, this interest continued and morphed. We have written before about how during some really challenging times his performances were true highlights – when he won a school talent competition in his mainstream school.  When we followed his dreams and helped him organise a “Flashing Lights Tour” for his thirteenth birthday where he performed on stage in front of 50 family and friends – complete with stage lighting.

Through all this time we tried to bridge this interest into other things. We bought him a ‘Streetlights of the World” book. We had a magical trip to a London show, where he was invited in to see the sound and lighting booths. That was written up for and published by Official London Theatre’s website.

A couple of years ago it became obvious his little kiddie spotlights weren’t enough. We could never walk past the aisles were LED spotlights were stored. So, once he was able to be trusted with the plugs, we started a succession of disco lights, disco balls, flashing lights, strings of lights around his bed (with his own little box with buttons to make them flash). Some were welcomed. Some ended in tears. As things were inevitably broken, we never yelled, we shared his sense of sadness.

He became adept at googling and began watching instructional YouTube videos. We started hearing about his desire for a ‘moving head light’. These are amazing contraptions that can be programmed to spin, change colour, etc. Last Christmas, Father Christmas brought one, with some trepidation. We are still at a point in life where every electronic device we purchase gets an insurance policy. We have replaced many phones and tablets due to the reality that at times things get broken. But these lights don’t come with replacement insurance. There’s also a cost difference between a cheap LED light and a moving head light (although some are not overly expensive). We were aware the danger of this getting broken is high and we know what happens when a loved item gets broken. Once that new moving head light was in hand, instantly the requests started for a ‘DMX control board’. Again we were concerned, looking at the hundreds of little buttons and slides on those things, we knew the likelihood of frustration and possible breakage was high.

So it took another year before Father Christmas came on board and brought a DMX control board. A year, I might add, in which that moving head light was treated with kid gloves and handled with absolute respect, the lens protected at all times. He had earned this next step. I wrote about how touch and go it was on Christmas day, when we figured out we needed help in helping him programme this board. Fast forward a couple of weeks. With some intensive googling and YouTube watching by dad, the DMX control board is now working. The lights are up on a new light stand (another Xmas present, from an auntie and uncle).

Our guy has finally got what he was showing us he wanted for more than a decade. A fully adjustable and controllable bank of fun lights in his room.

Why does this matter? Why is it worth a blog post?

I was lying in bed thinking about these lights. And I allowed my mind to wander back to those early light flicking, oh-so-stressful days which I had kind of blocked/buried in my memory. We weren’t clued in then. We used to tell him off. We were undoubtedly escalating things when we should have been calming them. We didn’t really understand his sensory sensitivities. We weren’t receptive to allowing him ‘unusual’ lighting. As I was lying there thinking about this light stand and his deep satisfaction as he sits in his bed controlling these lights (in addition to the moving head light, he has an ultraviolet light and a couple of other LED stage lights on there), it occurred to me this isn’t a fleeting interest. This is the result of more than a decade of persistent interest that our son has consistently shown in something, despite our discouragement way too often. It’s an interest he has cultivated. An interest he has devoted hundreds of hours of research to. An interest that parallels with our family’s involvement in theatre. An interest that could become a way for him to contribute to society and the community in various ways in the future.

Just because it’s not ‘typical’ doesn’t mean we should shy away from it.

As parents guiding amazing young ones with FASD, we just don’t know sometimes where things are leading. We have to celebrate our children’s interests. This is especially important for those with FASD, because these interests can be a multi-sensory way into learning, growing, and laughing. They can help us together create some wonderful moments and can develop an important sense of self-esteem. This is especially important for those walking this world with FASD, when so much of life can be full of people telling them what they are doing is wrong and that their interests are not socially ‘acceptable’. Why, for example, is my desire to have one type of lighting any more valid than my son’s desire for variable lighting? I sat in a meeting just this week where one set of lights was flickering and this was affecting an autistic person in the room so the lights were rightly turned off. I have to say that I was distracted and tense in a room that was not set at a lighting level I was comfortable with – what a good reminder for me that was.

Head on my pillow in the semi-dark, I realised again while flitting across the years with the long view, the importance of tuning in and shining a light on our loved one’s interests, whatever they are. If we are open and creative, we as parents and caregivers can flip something that might seem to be a royal-pain-in-the-neck into true moments of joy and possibility. And everyone, everyone in the family needs to have those moments.

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For more insight: Lee Harvey-Heath, an adult with FASD, spoke about how these environmental issues can affect a young person with FASD in this video – starting at 4 minutes.