Redha

My first time watching a movie at Golden Mile. It was a bit of a walk from Lavender, and we emerged from the theatre on a cold, wet and unfamiliar Sunday afternoon, my stomach empty and grumbling, but it felt worth it. Especially since all profits  were going to the Autism Association!

The film portrays the lives of a couple with an autistic son, Danial.  Some parts felt like an educational documentary, but I could see why it would be important to use such a powerful platform to reach out to the masses. And all things considered, I thought it was a very realistic portrayal of the struggles a family unit goes through when they live with a person with special needs, and how acceptance and support from different blocks of society can really make a difference in meaning and quality of life.

Just before the film started, the audience was asked to observe a few moments of silence for the female lead, as her own child had just passed away that morning.

It made me think: Aren’t the hearts of parents universally the same? They just want their children to grow up happy.

“I Can’t Work With Normal Kids Anymore”

Imagine my relief, when I blurted this line out, and Y, a wonderful therapist whom I greatly respect and adore, echoed my sentiments and told me that she could totally understand.

“I used to get so frustrated with normal kids as well”, she said. “I’d look at them and think – you have everything you’ll ever need and yet you are not cherishing it. There are kids who have so little, born disabled… and yet they are trying so hard” (I almost started tearing when I heard her say that).

“Yes! I felt that way even before I came here, and now I feel that even more strongly.”

R, who was nearby, also agreed, saying that once you’ve gotten a taste of therapeutic work, it’s hard to go back to whatever we were doing, because it will naturally seem so much more meaningless (he was from the corporate world, imagine that!).

And indeed, I do feel that most of the things I’ve done before has been pretty meaningless. Not all, but most.

Because when you’ve seen how a non-verbal person can communicate through singing and smiling, when you’ve seen a so-called intellectually disabled young woman reach out and give you a high-five in the middle of our drumming improvisation, when you’ve felt the hands of a 4-year old with autism stretch out and hold your arm and bring your fingers to the piano, laughing as she plays the piano through your hands, and then reach out to touch your hair and say your name in a loud clear voice… How can one go back?

How can I go back to the system where days are spent rushing through syllabus, where fancy lesson packages are prepared with no time to carry them out, where obedience and silence are order of the day, where countless events and excursions and enrichment activities are carried out not because they are truly beneficial, but because KPIs need to be met, because portfolios need to be beefed up, because people need to look good on paper.

I just want to pull my hair in despair when I think about it.

As much as I am living in the present and getting the most I can out of this amazing experience, I know that this too shall pass. And then… what?

The Goodbye Song

We have a new addition to our Thursday line-up: “Ax”, a 12-year old boy with severe autism.

As we settled into the observation room to watch R and Yani (Yes, Ax is so challenging to work with that he needs two therapists!), Ax’s mother came in and sat next to us.

Throughout most of the session, while R and Yani were doing their stuff, converting Ax’s mono-syllable vocalizations into song, using the momentum from his ever-moving hands to beat in pulse, all the while trying to get him to articulate vowel sounds which might eventually lead to speech, Ax’s mother made small talk with us. She seemed light-hearted and was even able to laugh when her son had bouts of non-cooperation, only to bounce up, full of energy a second later.

When it was time for the Goodbye Song, Yani decided trying to get Ax to say “bye”, or at least something similar to it.

“Goodbye…” she sang, pointing to herself.

“Goodbye…” R joined in as Yani gestured to him.

“Good…” Both of them looked expectantly at Ax, waiting for him to finish the word.

The first time went unresponded, but the second time, Ax made a clear “AYE” sound, so distinctly different from his default “Mmmm” that Yani and R burst into an enthusiastic “YES!”

Determined to elicit another greeting from him, the Goodbye Song was repeated. Third, fourth, fifth, sixth time. But Ax seemed either unable or unwilling to produce the word again.

In the observation room, we watch in silence as the last line refrains again and again, with Yani’s beautiful soaring voice, R’s gentle piano accompaniment, and that expectant silence at the end of every phrase, each time heavier than the last.

Ax’s mother has also fallen silent, and from the corner of my eyes, I can see her watching the scene unfolding before her like a hawk. In her stillness and silence, I sense her hopes and expectations, as heavy as the space at the end of those phrases Ax did not fill.

A simple wish from a mother – to hear her child speak. To be able to communicate with him. To know what he is thinking. To know that her child will be able to take care of himself and survive in the world when she is no longer around. Silently, she watched.

When Yani finally had to give up due to time constraints, Ax’s mother stood up to go too. Before she left, she said to us in an almost-apologetic tone: “You see the challenge of working with him.”

After she left, I sat there for a few seconds more, just recovering from one of the most beautiful and intense Goodbyes I’ve ever seen or heard.

So far.

“Welcome to my World”

A very moving concert which left me tearing at some points.

A particular boy doing a particular dance caught my attention. We witnessed him do his solo. The crowd cheered and screamed encouragements at him.
A part of me instinctively felt, that, in a “normal” classroom, a similar boy might be yelled at for being inattentive. Screamed at for being too active. Punished for being too restless.

Special Needs education need not only take place in Special Schools, does it?
If every child is unique and special, then the “special needs” that we talk about should apply to everyone.
Unfortunately, the constraints of a system would not allow that.

Anyway, on a brighter note. Brother, if you are reading this, I just want to say that I am very very proud to have such a talented sibling like you! =D