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© 2023 by inTune Pathways 

ABN 78 435 698 441

  • Kristy Forbes

Love, white walls, and the mattress on the floor

Updated: Feb 25

Always remaining mindful of my thoughts and translations of what goes on in our daily life as an autistic family is so important. Miss 7, who is non verbal autistic and has significant support needs has been trying to tell us, her parents for years that she would much rather a room with bare walls and a mattress on the floor. It pained me. I felt it resembled an institution, abandonment, and would send out a message that we don’t love and value her as much as her siblings because they have rooms stuffed with ‘things’ and lovely bits hanging off the walls. And, I know that others would see this contrast and come to their own conclusions around this as well. Because we’re human. And that’s what our brains do. We compare. But then I got to thinking. Acceptance. What is it? It isn’t just about accepting the things we cannot change and having the courage to change the things we can. Oh no. It’s about having a complete lifestyle and internalised- translation- of- everything overhaul. It’s about challenging all of the limiting perceptions and understandings we have been programmed and conditioned to have. It’s about letting go of comparison. Holy shit that’s a big one innit though? Comparison. And stereotypes. Oh stereotypes. Girls have pretty rooms. Girls choose the pink sunglasses in the shape of hearts. Girls choose matching lunchbox sets with drink bottles covered in characters from girl oriented television programs. “Oh come on KRISTY! You’re SO MUCH BETTER THAN THIS!” I screamed to myself internally in the shops with Miss 4. It was confronting. Confronting to realise that so many of us are really confined to these old ideas, even when we fight for change in other areas. So much of it is unconscious, and bringing consciousness to it all takes time. A lifetime of undoing. I catch myself out and I challenge my understandings, my routines, my preferences, my translations and perceptions and my perspectives and priorities. Even my wants and needs. Those wants. How important are they? And it can be uncomfortable having to do so. But can we really ask for and expect equality in some areas and not others when it comes to diversity? So, Miss 4 chose the Ninja turtle sunglasses, even though they’re green and she’d never seen an episode of the Ninja Turtles and that’s awesome. It’s awesome because it means she chose them based on what she was drawn to, not what she was programmed to gravitate towards. It’s taken me longer to catch onto Miss 7’s preference for a room with bare walls and a nice soft mattress on the floor. In the process, I’ve consistently picked up photos and pretty things from the floor that she’s taken down from hooks..she’s even thrown items at them in order to get them to fall. She has handed items to me to let me know “NO thanks”. I’ve greeted her on her bedroom floor almost every morning for a number of years. With a smile. On the mattress she has ripped off her bed base and dragged to the floor. And I replaced her bed, read the research on melatonin and autism, replaced her curtains and blinds, swapped over the childrens’ bedrooms, gone to every other extent in my limited thinking in order to resolve what I perceived were the issues. And, for a while, I pathologised this stuff. “Oh this is what autistic kids do, they trash rooms”. Cringe. Shame. Sadness. Lesson learnt. It’s hard for me to admit it, but then I ask myself..how could I not pathologise? It’s every parent’s initiation into the world of parenting children on the spectrum. Pathology. Autistic kids throw tantrums and trash things. They don’t know what they’re doing. This is what the media will have us believe and understand, because of their limited understandings around the ways in which non verbal children in particular will go to extreme lengths to communicate their wants and needs to us over and over and over until we get it. And sometimes, we NEVER get it. But I get it now, Miss R. Over the weekend, her and I together (her sitting watching, beaming from ear to ear) stripped her walls, washed her windows and finally, after all these years, removed her bed base, popped down a lovely soft mat and placed her mattress back on the floor. We created a beautiful room with bare walls and nothing else in it but the soft light, absolute silence and complete sensory calm. Which is what she wanted, all along. Sensory silence. Sometimes, we think that silence from noise is all our children seek. But it can also be the noise created from people, places and things in other ways. Colours, shapes, textures, tastes, smells. It’s all noise for some of us. And here’s something else.. As a child, I often left the softness of my bed to sleep on the floor. I’d take my pillow (and sometimes I wouldn’t) and I’d just sleep straight on the hard floor. And it was a fantastic night’s sleep. I did this into my early twenties and I don’t know why. Perhaps it was grounding. Who knows? But it was comforting. I choose to leave behind the messaging of us not having a ‘normal’ life because of my child’s room being bare. I’m leaving behind the messaging that we’re not a ‘regular’ family because she sleeps on a mattress on the floor. I’m letting go of the need to have my children have the things I want for them, because my experience and wants and needs for them is limiting. We are a family who listens to our children, who tunes into our children’s needs and wants, even if it does take years to understand a single idea. And hey, you know what else? I’m letting go of the messaging that our children are impatient. They are single handedly THE most patient, resilient little beings with the brightest lights in this world. Thank you Miss R for your unwavering tolerance, patience and love for us when we don’t get it. <3