How do you explain autism to a sibling?
BY Rohini Katriar
Autism walked into our lives roughly 6 years ago, and contrary to my initial expectation,it is clearly here to stay. Unwelcome guest that it is, we have nevertheless not only made peace with it but learnt to be friends with it too. That journey hasn’t been easy but it’s definitely been unique.
I decided very early on that if we were going to be a happy, functional family we needed for all of us to know what the problem was, and what we do about it.
One of the things I found most challenging at first was explaining to my daughter, who was 5 at the time ,what was the problem with her little brother. She knew he was somehow “different” from the other kids but didn’t know how exactly.
At 5, I thought Ish (my daughter) was too little to understand the meaning of the word autism, so I just told her that D (her brother) could not yet talk like other children, and because he couldn’t talk, he probably couldn’t understand our words either. At that point my son had little or no eye contact and almost no response to his name either. We were told to just try connecting with him as a first step and really join him in his activities. That came easiest to Ish, who found it fun to line up all his cars or blocks in a particular sequence with him, or chase him around the house to make him look at her when she called his name. It was all a huge game for the kids and their giggles could warm this terrified icy heart of mine in a jiffy.
I made up a little story of how all of were ice cream (her favourite treat) and while most of us were vanilla or strawberry D was probably black currant ! Not as popular a flavour, not as sweet perhaps but still ice cream and still yummy to some. She loved that story and made up her own, saying D was strawberry ice cream with black currant sprinkles that’s all ( her way to explain that he wasn’t that much different from us )
As therapy became the mainstay of our lives with D, Ish learnt to spend Saturday mornings and days off from school at the intervention centre and see first hand the Occupational therapy and Play/social skills therapy he received regularly over the week. She called it his “talking class” !! She thought his therapists (mostly pretty and super motivated young ladies) were great fun and D was lucky to have such nice and kind “teachers” in his “school” as opposed to hers in Grade 1. At this stage she noticed that his “friends” were different from hers and also these kids didn’t “play” with each other the way she did. She learnt that all kids on the spectrum are different from each other, each had different skill sets and challenges. We all learnt to interact with D and his friends in a way unique to them all, and it was a great life skill we all learnt.
A story I made up at about this time was about how a mermaid, unicorn and fairy (her then favourite characters) were all best friends, but each had a different power and a different challenge ! The unicorn and fairy could fly but couldn’t swim and how the mermaid could sing and swim but not fly. The 3 of them found a way to be friends despite their differences and each iteration of the story was a new twist on how they could help each other.
We finally introduced the word “autism” to Ish. Till then she would refer to him as “special” or “different”. A particular incident of bullying in school made us realise that she needed to be equipped with the right explanation of her brothers condition to handle the questions she was now being asked. We gave her the google definition that said autism is a social and communication disorder that makes children affected with it see and react to the world around us differently from others. The next time she was teased in the park that her brother was “special” she retorted with a fierce glint “no he is not, he is autistic, go google it !” I was so proud of my little girl.
By this time my daughter had begun to recognise that many kids in her grade were also different in some ways. Some had learning difficulties, some had speech or lisping issues, some had difficulty staying focused and some didn’t know how to operate effectively in larger groups. She now was the most empathetic child in class simply because she had grown up with D and wasn’t fazed by these differences. Compassion and respect came easier to her and it warmed the cockles of my heart when she was routinely praised for it. The challenge now was to explain her brothers difference to friends who came home or in the park. She could explain that autism was a spectrum and that each kid presented its challenges differently. D had made huge improvements in these years so he could now spit out a few words and sing rhymes and play with her friends in his own goofy way. We’ve also been lucky that he has excellent gross motor skills so he could run or cycle faster and kick a ball further than most other kids, and also it didn’t hurt that he is gorgeous to look at (allow a mother some vanity !)
I noticed that by the time kids reach this age most of them are more sensitive and generally more understanding of each others challenges. We are doubly lucky that we have an older child that too a daughter who plays mother and play mate to him with equal enthusiasm and that she has a set of wonderful friends who have taken D under their wing and love and play with him as one of their own.
Our daughter is nearly 11 and I realise that before I know it my baby will fly the nest. The next few years will be crucial in building a lifetime for memories for all of us as a family. One of the things we love to do as a family is travel and very early on we decided that while we may not be able to do everything a neuro typical family can do, we were going to at least try our hardest to do most of them.
So while the going had been tough with massive meltdowns at airports and eating issues at foreign locales, we stuck to it. We have done Disneyland for his 5th birthday , holidayed in Bali, trekked up Tigers Nest in Bhutan and gone sledding in St Moritz, Switzerland. I am shamelessly name dropping these locales just to give an idea how wide we have cast our net, given that we live in India. This summer I intend to spend 3 weeks backpacking in Europe with the kids by myself !
My daughter has been so understanding and supportive in this whole journey. My heart breaks for her knowing that she has had to answer questions about him and defend him in places where I have not been around. That her childhood was spent seeing the unfairness of the world while I was sheltered from it well into my 30’s. That she will also have a sibling to look out for throughout her life while I’m blessed to have a sister who is my rock. That she hasn’t had our undivided attention the last 6 years and I have actually scheduled weekly mama-daughter dates just so that I make sure I connect with her regularly.
She has witnessed first hand people looking at us like we are exhibits from the zoo when we had to rent a wheel chair in Disneyland for D when at 5 he was too big to fit into a rented stroller and we knew he couldn’t possibly not have one for the whole day. We have been morose about the sight of him in a wheel chair for all of 5 minutes after which Ish decided it wasn’t fair that he got to be wheeled around so she told him to scoot over and settled herself next to him. Now we were exhibit B ! Parents who were pushing 2 seemingly healthy children in one shared wheel chair ! How we laughed …..
And that is how we have gone through this journey. As a family. With a lot of love and laughs and of course some tears as well. Along the way I learnt that sharing the journey with Ish in an age appropriate way has probably been another one of our successes.
The road is long and windy , do stop and smell the flowers and a moment to rejoice !