I was inspired to write this whilst I was tucking my son into bed. My husband and I tucking our kids in to bed is by far my favourite time of the day because no matter what sort of a day everyone has had, for this half an hour everyone is calm, quiet and together. Connected. So on this night, just like every other night, it was my turn to cuddle Touristo ‘goodnight’ whilst my husband sang to the Princess. As soon as I pulled his weighted blanket over him, he pulled my face up to his so he could smoosh our noses and foreheads together (like a ‘hongi’), followed by wedging his arms underneath the weight of my torso. When he is in this position, he is relaxed and it allows him to still his mind enough to fall asleep. After 15 mins like this I move his arms close to him, tuck them under his blanket and kiss him goodnight.
Whilst I was laying there listening to his breath slowing down and slowly turning into a light snore it made me think about how lucky I am, that I have this amazing little person in my life, and that we have this inexplicable bond. I then thought about our bond, and it seems nuts…..me and this little person who rarely speaks. A person who the outside world sees as aloof, but all I see is someone with this extraordinarily rich inner universe. We are like two separate parts of one whole, constantly drawn back together by invisible ropes. How did we get here?
Then I wondered if we would have this level of bond if he were not autistic…….and we probably wouldn’t. Let me explain……and I will start with some context………..the best description I have heard of for autism is the Maori word ‘tūāwhiotanga’ which means “his or her own time and space”. This is very much my son (and myself), and that space that he lives in is more beautiful than Pandora. But I didn’t want him to live there alone, so I have spent the last 6.5 years of his life visiting his world to keep him company. He likes the company. To do this, I have spent countless hours watching him, trying to understand everything that makes him tick, and then joining in on his terms where he wants me too. It has taken me years to weasel my unconditional invite into his beautiful world, but it has been well worth it.
The one thing that makes me so sad is that his time and space is beautiful and gentle, but ours is not. His space is filled with goodness, light and joy. Our world can be very cruel and not at all accommodating for someone like him. When he was little, he lived totally within his own time and space……he was so happy. As he grows older and has started school he is starting to tune into this world more and more…….and he has to do that to work toward independence one day…..but his unbridled joy is getting sucked away little by little. It makes me sad.
So here I am…..I want this child to have the opportunity to go to school and learn how to be part of the community. I want him to have the opportunity to learn to live independently if that is within his capacity, and to do that he can’t be on an island and he has to learn how to be with peers. But to do that…..part of Pandora crumbles. What does that do to him?
On the other hand, I also dream of entering the US green card lottery, selling our house and moving to Orlando where our expenses would be significantly lower than in Sydney, which would allow me to home-school kiddo and go to Disney every week. But I can’t teach him the social stuff that he has the opportunity to learn from peers……..plus I doubt my husband would like this plan! Plus, what would that do to him?
Each day I see a tiny, little bit of that light that makes him ‘Touristo’ being extinguished……I just hope it doesn’t ever go out.