Katie, 7, has autism, which can affect how she plays. Over time, her family has learnt the rules of her game.
Eva writes to Katie about the puzzle of finding the right toys.
Dear Katie,
How long did those toys lay unused for, waiting for you in their boxes?
Months, sometimes years, as a reminder of our long journey.
When you were little, we spent Saturday afternoons in charity shops, trawling through mountains of toys. I wasn’t looking for the latest product; I was hunting for educational toys, games and board books. I was putting my faith in finding the right toy to help bridge that gap between your chronological and developmental age.
Autism is a spectrum as big as the sea. So, while your neurotypical peers galloped ahead, time seemed to stand still in our private universe. These toys represented an attempt to help you progress so we could get to our unknown destination.
But you were just not interested. You rejected baby dolls in favour of an empty pushchair (for sensory input). You tapped or scratched plastic food items. You scattered a sea of multi-colour hairbands and hairclips across the living room thousands of times.
Over time, you continued exploring an increasing number of toys and made your own choices, as we learnt the rules of your game. To let go of expectations. To be led by you. To gently expand your interests. To be patient and realistic in our hopes, because you develop at your own pace. To place you at the heart of our decisions.
Your most hated toy was a jigsaw puzzle. I remember putting a puzzle together on the floor, only for you to drive your pushchair wheels over it relentlessly, pulling the pieces apart.
And for many months, that was it.
Over time, the specialist school setting and one to one help made a significant difference to your development. Signs started to emerge in 2016; we played a simplified version of a board game, then another one. At age six, you were interested in visual games; memory stuff that you are good at; games that do not require many words.
One day I felt brave and took the puzzle box off the back of the cupboard.
The one that has photos of duck, apple, teddy bear and other objects that you recognise, because you love photos, rather than pictures. I put two pieces on the floor near you, next to each other. I watched you move your hand towards them, making the pieces fit, patting them into place, with a lump on my throat.
That weekend we saw some developmental leaps. You cut through a piece of paper with scissors for the first time – despite your motor skills issues. You self-initiated taking yourself to the potty. You put on your ear defenders at church independently, because you realised you were struggling with the music from the band and tried to prevent an episode of sensory overload.
You are, more and more, finding your feet in the world. Along the way we are supporting you as best as we can, learning more about autism, negotiating difficulties together. Sometimes people don’t understand. They’re scared, judgemental, not willing to be taken out of their comfort zone. They are missing the incredible human being that you are. But we have surrounded ourselves with people who, near and far, are invested into our journey. There are people in the world who put being human at the centre of their lives; this gives me hope that your life as an adult will be as fulfilling and happy as possible.
There have been many bumps along the road, but whenever we fall, we will get up again and continue walking together.
This is the part of our life that most people simply do not see.
This is the Secret Life of Us.
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