Singapore-based Brit Pippa Gresham opens up about her experiences with a child with autism in her open letter to her daughter
In support of World Autism Awareness Week, this open letter to my 5-year-old daughter Hetty is our way of sharing just one alternative recipe of life. When people ask “What does she have?“, I find the answer quite tricky.
For a hundred autistic children, you will find a hundred types of autism: she is our version of the Heinz variety*. If we are looking to the labels, we get a whole lot of SPD (sensory processing disorder), some ASD (autism spectrum disorder) and a little bit of je ne sais quoi in the everyday life of our little girl. The journey has been a pendulum of fear and joy rolled into one but we are so lucky to have options for support in Singapore and with Hetty continuing to thrive, the daily victories bring plenty of optimism beyond the initial scary diagnosis.
A letter to my Little Heinz Variety
You have heard a lot of people say to me “I don’t know how you do it”, but to be perfectly honest, this was not my plan! I am not always a good person with selfless energy and time, but you have changed me irrevocably and have led me out of my perfect vision of motherhood and into yours instead. I am learning every day that in your world you have to wake up and smell the roses… “again…and… again… and… again, Mummy!”
You have taught me what patience really is. When the world is too scary and you have your meltdowns, you have needed me to learn to control my own emotions, not to give a flying duck about others’ stares, and reflect on my reaction to the situation by chasing the ‘Why?’
You seek my help and it’s no use both of us throwing our toys out of the pram… so, we sit on the floor in the middle of the vegetable aisle of Cold Storage and I catch the avocados as you lob them across the floor. This makes you laugh and we head home with half a shopping list.
You have taught me tolerance and acceptance. I’ll let you in on a secret: I do wallow in self-pity wondering what it would be like if things were different or if it is all my fault: “Did I do something wrong during my pregnancy?”; “Did I eat the wrong foods?”; “Did I worry too much?”. Or worse, I compare my lot to others who have seemingly wonderful lives: “What do they have to worry about? They don’t know how lucky they are!”.
However, when it’s just you and me, lying on our backs on the bed, staring at the fan, naming ALL the My Little Ponies (from the Mane 6 to Seaquestria), the voices are silenced. It is arrogant of me to think I have any control over something so much bigger than me. It is ignorant of me to make assumptions about other people’s lives and what they have to cope with. It is what it is, and absolutely everyone has their thing.
You have taught me not to take anything for granted. I clearly remember the day that I knew that I was going to be okay. It was when your school rang to let me know that you had shoved another child sparring over a toy, but I was so excited that you had initiated play and were interacting with another little person, that I almost forgot to ask if they were alright!
I have been told by the experts in your field and read all the books about what I should be expecting from you in the future, but to quote our favourite furry, stripey dude, Dr Seuss: “You have brains in your head. You have shoes on your feet. You can steer yourself in any direction you choose”. Your brothers adore you and think you are as cool as custard. They will be your best friends and allies for life when others are not so kind, leaving you out of their games when your rules are different or just simply don’t understand. They will know soon that they have a big responsibility ahead of them to share, but what a team you have behind you, now and always.
You truly amaze me! You were doing 35 hours a week of therapy at age 2.5 and the day you wearily looked at me from your car seat and said with your 20 word vocabulary, “No more…!”, I knew you were done and your childhood could begin at age 4.
You had your own skills and you had taken back control; life was for living and it was time for me to dial it all back, try and cast aside all my ‘shoulds’ and ‘what ifs’ and hold on for the ride! Every therapy, every school you attended played their part in so many fundamental ways, but Serendipity grabbed our hand and introduced us to AIMS, a tailor-made model of dynamic teaching and parallel play, and only then did the light return to your eyes and the world became your friend and the words – which I never thought I would hear – started to tumble out.
The journey is bumpy and unconventional and the recipe of life may be a little less Delia Smith and a bit more Jamie Oliver (i.e. less about perfection and more about winging it), but as my friends can vouch, I am no culinary whizz anyway; we can tweak it to our own tastes and embrace the Heinz Variety*!
*Henry J. Heinz introduced the marketing slogan “57 Varieties” in 1896, although Heinz was manufacturing more than 60 products (of Heinz pickles and sauces) at the time. Today the company has more than 5,700 products around the globe. Heinz 57 variety is now lingo for any mixture or mixed variety; any composition variable or undetermined parts.
Lead image sourced via Humanitas Research Hospital
All other images courtesy of the author