Being a parent to a child with disabilities can cause you to feel the need to DO things for them and with them all the time because they need extra help, they need extra experiences, basically they need more because the assumption is that they have less to start with. I have often felt overwhelmed with all of the extras we need to put into place to provide Rufus with a full picture of life skills and experiences. We have therapies, appointments, groups, toys and pieces of equipment to attempt to fill in the gaps. Of course we do our best to provide both children with everything they need to live a full life but providing my non-disabled daughter with these things just feels like nothing more than bringing up a child. The things we do for her and with her are essentially the building blocks to help her become the adult human she will be one day. I take her to the park and that ticks the fresh air and exercise box. I take her to a playgroup and that ticks the socialising box. I take her to a play date and that ticks the building relationships box. I take her to nursery and that ticks the learning box. I take her to soft play (yuck, I hate those places with a passion) and that ticks the climbing, mastering heights and fun box. You get the picture. Every experience ticks a box. We go through our days with kids feeling like we have this need to do something, at least one thing a day, that ticks a ‘developing the person’ box. That way, we feel we are winning at the parenting game.
Recently, I have made it my goal to try out every multi-sensory play room in my local area. I decided to find the best multi-sensory room so that when my daughter goes to pre-school in September, Rufus and I will go on a weekly basis and that will be one of our ‘things’ that we do together, just us. I have known for a while that sensory play is good for babies and people with disabilities but I’ve never really thought about why. I went a couple of times to a local place when my daughter was a baby and thought it was a cool place to hang out but having such a grumpy baby to start with meant that she never really ‘chilled out’ like my other mum-friends’ babies did. I think I had visions of Rufus bum-shuffling all over sensory play rooms, getting loads of exercise and practising physio exercises. I wasn’t expecting what actually happened.
Rufus is capable of moving around a room now to investigate things that interest him and at home moves very quickly from one thing to the next but this is not what happens in multi-sensory rooms. He just sits or lies back and takes it all in. Against all of my mothering instincts of doing things for and with him, I have to let him lead on this one. The time we spend in these rooms are not for me to lead him or play with him or coax him into doing something that will develop his skills but for him to just be. And that’s really hard for me. But it’s so, so good for him to just sit back and be awed by bubbles in coloured water, twinkly lights, projectors, fibre optic sprays and mirror balls.
It’s so good to just stop, sit back and allow ourselves to be in awe of something, anything, just for a little while. Not to take a photo, say anything profound or do anything about it but just to simply take it in.
I don’t think I do this enough. Hmm, I’ll have to DO something about that.
Watching him being completely mesmerised by something never fails to fascinate me probably because it stops me in my tracks seeing my normally busy little boy sitting still and looking so intently at just one thing. Long before we started going to multi-sensory rooms I started noticing the kind of things that float Rufus’s boat and grab his attention. He loves looking at leaves on trees swaying in the breeze, the raindrops forming on windows, shadows moving on walls, light reflecting on different surfaces, seeing the world through a different coloured sheet of plastic and himself in a mirror. These are simple, natural things that he finds interesting and enjoyable and they are going on all the time (well, the rain, the shadows and the wind certainly are where we live) and I’m just missing them because I’m trying to create all these scenarios and learning opportunities for him.
I heard a good quote today: ‘We make the weather for our children’. I know the guy who said it was talking more about how positive or negative parenting can impact children’s mental health but when I heard it I thought of Rufus. I think for a lot of children with disabilities like Rufus, the weather is often stormy, changeable and unpredictable even when we are creating fun, organised activities for them to enjoy. I think the very fact that they are doing yet another day in their bodies which often let them down or don’t feel right, with thoughts that just don’t come out as words and feelings which get increasingly frustrating as people keep trying and failing to understand them can feel like a crazy weather day, all day. Perhaps when Rufus is staring intently at the leaves moving on trees or the bubbles dancing around in the light tube he is trying to create for himself a little pocket of calm weather. He’s opting out of the activities, the physio and the constant ‘doing’ and he is choosing to just be.
So in our busy weeks of activities, play dates, therapies, appointments and playgroups we will most definitely plan in trips to multi-sensory rooms to stare at bubble tubes and twinkly lights but more importantly we will plan in time to stare out of the window at the rain, sit under trees on a windy day and look at ourselves in mirrors.
I’ll let you lead on this one, my boy. It’s time we started slowing down.