Invisible Red Paint, and the Not-Fun Mum

Red Paint Brush

Image by smaneal via Flickr

“Invisible red paint” is an analogy I came up with years ago, to describe some of my son’s more confusing and upsetting behaviour. I didn’t have other terminology to describe it back then; this behaviour was well in place prior to the diagnosis of autism. I suppose today I’d refer to it as anxiety, obsession, sensory issues, and the result of the frustrations and confusions that come from not having language. “Invisible red paint” then is short-hand for a particular way all those problems manifested, that greatly and very negatively affected my whole family.

There are always objects in a room that I must be careful about touching or moving, in my son’s presence. This is still true today, but it used to be a lot worse (especially between the ages of two to four years old). Objects I had to be careful around included toys, light-switches, even couches, doors and windows. I became so tuned into figuring out what I was “allowed” to touch, and not touch, that I started viewing rooms as full of objects splashed with red warning paint. I couldn’t “see” the paint, but with enough observation and experience with my son, I could figure out what had invisible red paint on it in advance, in order to avoid the meltdown that would occur if I was to touch those things.

Some objects always have invisible red paint on them (such as those I’ve discussed in a previous post, called “anchors“). Other objects will have invisible red paint on them weeks or months in a row, such as when my son’s obsessing over certain windows and doors being open or shut. If his anxiety levels are high, almost everything in a room can have invisible red paint on it; those days I felt like my arms had to be tight to my sides as I walked through the room, careful not to knock or rub against anything.

Often times I felt like a prisoner in my own home. Unable to sit on the couch, change the TV channel, open a window on a hot day or close a door on a cold one. I would end up sitting stock-still on the floor, hoping no one would visit since they couldn’t see the red paint, and would sit on or touch the wrong thing, and I would end up trying to deal with the consequent meltdown that might go on for hours. It was like living with a mad person, and going mad in the process.

I was doing the best I could, to cope with a condition I didn’t understand. When he had meltdowns, he was unable to understand or learn or develop, he was just lost in a sort of whirlwind of destruction that often included self-harm. So I thought that my awareness of this invisible red paint, which enabled me to avoid setting off his meltdowns by touching the wrong things, was enabling his growth and development since it meant more calm time when he was able to learn and interact. But I was also feeding the madness: The more control I gave him over his environment, the more time and energy he spent trying to hold onto that control.

Therapists would come into my home to work with him, and to teach me new skills to deal with my son. I tried to explain to them this invisible red paint thing, I asked for their help in tackling the issue. For a long time they didn’t understand, they didn’t listen, which is one of the reasons I wish I’d been dealing with an “autism expert” and not just various therapists who deal with a wide range of conditions. One particular incident with the therapists (or series of incidents) was quite upsetting for me:

Whenever the therapists (mostly the speech therapist and occupational therapist) would visit, they’d bring their own teaching toys. These toys did not have invisible red paint on them; my son seemed to only consider things that he owned in some sense, as being candidates for invisible red paint (such as objects within our home). So it was fine for the therapists to touch these “introduced toys”, which also left with them each time. I tried to tell them that he wouldn’t let me touch his toys, but here they had evidence that he was perfectly fine with people touching toys, and so concluded that the problem must be with me. They said I had to try to be a “fun mum”. Then proceeded to show me how to play with my son, using their introduced toys. I thought “this is ridiculous, I know how to play with my son”, but did what they wanted to see anyway. They praised me for my efforts, thinking they’d fixed that problem, then left with their introduced toys. The moment I tried to play with the toys that were left in the house – his toys (the ones with invisible red paint) – meltdown city.

When the therapists came back the next time, I tried to explain that it wasn’t working. They were sceptical and showed me again how to play with my son (grrr). This time I told them to try playing with his toys – not the toys they had brought with them. You guessed it, meltdown. Oh whoops, guess it’s not the mother’s fault for not being a “fun mum” aye? They refocused their efforts to trying to find ways to interact with his toys that wouldn’t set him off. They never found the key to washing off the invisible red paint (to gratuitously extend the analogy). The only thing that worked if someone – anyone – wanted to play with my son or interact with his environment, was to bring in new toys that would go at the end of each play session, or to take him to an external location so that nothing had red paint splashed on it yet (easier said than done since going to new places also set his anxieties off). If he spent any extended amount of time with particular objects or at particular places, it was as if I could slowly see the red paint building up, as he became more controlling over what could and could not be touched by others.

It was partly what he learnt at those external locations, and with those not-owned toys, that would gradually and slowly provide the key to breaking the tight link between objects, invisible red paint and the meltdowns. It was also partly the passage of time that helped fix the problem. Because as his communication skills grew I could explain to him why certain objects had to be moved or touched. Once I could explain to him how timers worked, I could use that tool too to limit the behaviours by providing time limits for his control, then let him know how long it would be before he was allowed to control an object again. Also, as his communication skills developed, there was the possibility of negotiating with him; if he let me take away control of something, then he could have a reward of some sort. The key was always in avoiding the lead up to the meltdown though; trying to discipline or manage the meltdown once it had started was pointless since it’s like all his senses shut down and he can’t hear or see or speak. Just scream and cry and lash out.

I no longer live in a house covered in invisible red paint. When his anxiety levels are particularly high though, I do start to see the room in terms of reddening objects. I’m very mindful of never letting him get to the point where he’s made me a prisoner in my own home again; if an object is becoming red, I make it clear to him that he can’t obsessively control it, often by asserting that he can’t have his way with it, then distracting him to something else so he doesn’t become fixated. There are always things he’s allowed to control (I’m always encouraging his independence), but there’s a difference between control and obsession; invisible red paint occurs where the two become a volatile combination.

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