As parents of a child on the autism spectrum, my wife and I have learnt a number of coping mechanisms and have had to develop both our perception and our patience in order to understand our daughter's needs.
She was non-verbal for most of her young life and while her words are slowly coming, her vocabulary is building by the day. It still takes some eager and focused listening to understand exactly what she needs and wants.
She pronounces "tomorrow" as "tomato" and when she says grace for her food, the sing-song "and the many blessings" comes out as "and the many Christmas" and sometimes "and the many best friends", which I humour myself thinking might actually be intentional.
Routine, as any parent of an autistic child will tell you, is of the utmost importance. For example, as a baby and toddler, travelling anti-clockwise around the Cape Peninsula, or reverse or parallel parking induced immediate meltdowns, likewise going into grocery stores or malls she was not familiar or comfortable with.
Neurodiverse children also severely dislike when the plans change — because it messes with the routine.
So we have learnt, through her special needs school, to develop "social stories" to prepare her for any changes to routine, or any new impactful developments in her life.
For example, she started horse-riding as part of her extra-murals. Horses are twitchy, shifty characters, and can be easily spooked by a child on the spectrum's sudden vocal outbursts, echolalia, impulsive movements and other stimming behaviour. So in the weeks leading up to her first lesson, we read to her a "social story" about how to behave herself when around the horses.
If it's too windy and the lesson needs to be cancelled, we need to prepare her for this too. The "social story" goes something like this:
My name is <<child's name here>> and I love horse-riding. We ride our horses inside a big tent, where there is soft ground underneath. Sometimes, if it is too windy or if it is raining too hard, the sound the tent makes can make my horse scared, just like loud noises make me scared and give me a fright. I do not want my horse to be scared. So I understand that when the weather is bad, I cannot go horse-riding on that day.
This helps prepare her for the disappointment that a break in her routine will cause, and the thorough enjoyment and therapy she gets from riding horses will be disrupted.
In another instance, my folks would be staying with us over the holidays. During this time, she becomes very attached to them and it's heartbreaking when they have to travel back home.
My Ma Jean and Pa Alvin are staying at my house for the holidays. But they also have their own house. I love it when Ma Jean and Pa Alvin come to stay at my house, but I still have to be a big girl and sleep in my own bed. I will be sad when they leave, but I understand that they also need to go back to their own house after the holidays. But I am also happy because I will get to go back to school and see all my friends <<list all her friends here>>.
These social stories have been invaluable to us. They help us prepare her and we've learnt to create our own social stories on the fly, especially if there is a busy day ahead of us that will involve visits to multiple stores and malls.
A little bribery helps as well...
After we are done going to mommy's shop and daddy's shop, I will get to go to my "purple shop" (Toys R Us), "green shop" (Toy Kingdom), or "blue and yellow shop" (Crazy Store), but only to look at the toys and not to buy them. If I am a good girl, maybe daddy will buy me "burgercheesechips". Then we will have to go to more of mommy and daddy's shops, but I will be happy because my tummy will be full and I visited the toys.
Social stories have been a lifesaver for us and have helped her understand changes to routine.
These can help other parents of children who aren't neuro-spicy, especially as you prepare for the upcoming first day of school, or in the event of a grave illness in the family, you could prepare them for the inevitable loss of life.
The importance of being truthful with your child cannot be overstated.
This is going to hurt.
This is going to feel uncomfortable.
This is going to make you feel sad.
But through the social story, you can provide reassurance that the outcome will eventually be pleasant.
Take it from parents of neurodiverse children — a little preparation, honesty, and sometimes some bargaining, can go a long way in preparing your child for big changes in their little lives.
* Lance Witten is the Editor of IOL.