Tribal Identity

Years ago, in a moment of foreshadowing, we ran into a mother and her autistic daughter.

We were all at a live Dora show (don’t judge me!) and the mother had high hopes that her daughter, who was a huge Dora fan, would enjoy the experience. But she couldn’t handle the amplified sound and darkness, so they were leaving, and both mother and child were crying, one from crushed expectations, the other from overburdened senses.

I exchanged a few words with the mother, nothing of significance, but her face has always stayed with me. And shortly after, I joined her tribe.

In the beginning, we were too overwhelmed to relate to other people. The daily demands were such that there was no reality beyond the Lakshman Rekha drawn by sensory overload, ritualistic tics, and communication fails. Maybe it was best. Then we never had to see how left behind we were.

But when relatives younger than A began to forge ahead of him in milestones, I occasionally lifted my head and took resigned note. One demoralizing evening, after listening to someone describe their child’s birthday party, I sat on the stairs and cried for what should have been, for what was now our reality, and in fear of how to stay positive.

I hate remembering those days.

I am sorry to all the people with whom I lost touch. And if you kept me in your thoughts and reached out to me despite my long silences, you know who you are, and I will never forget you.

Looking back, I wish I hadn’t been so afraid. It was like being a new immigrant to Special Needs Land, and I had yet to meet all the amazing people who would become our companions.

In Special Needs Land, they all matter, the encouraging friends who make up for the occasional Grumpy Guts who doesn’t want to be around a kid who is different. We just had to take that flying leap of faith.

It was harder than I like to admit. We felt like we were living in a fishbowl. Raising a special needs child is like hanging a sign on your forehead that says “Please leave comments here.” Trusting in unknown people used to make me quake with dread. When you are still learning to manage your own child, the pile-on that is the unsought advice turns even a trip to the supermarket into a forced march.

Our new tribe is made up of some wonderful people. Fellow special needs families and their adaptations to the new normal. A’s lovely and kind doctors who have lent us their strength and held our hands through many hardships. His home therapists who brought some peace and structure to our family life, and taught us how to leave the house with minimal drama. The owner of the dosa place who reserves his favorite table when we are coming. The bus driver and attendant who visited him in the hospital, and who still screech to a halt when they see one of us and shriek, “How’s our baby?” The summer camp counselor who sobbed when she said goodbye to him. My mother-in -law, who buys him one red shirt after another because that’s his color, and always remembers to get ones with soft seams. My parents, who listen to my stories and enjoy all his adventures, and give the best advice. My sisters, who, despite not seeing him often, have a knack for making him laugh. The cousin who always invites him to her kids’ birthday parties, and whose wonderful in-laws let him roam free in their house. The boys at after school who play Uno with him. The Balvihar teachers and parents who welcome him into their homes, cook for him, and let him sit in their laps. Every day, the generosity of this tribe touches him gently, never overwhelming, only loving, and seeking to understand and give him a sense of familial trust.

All of you make me cry, but this time I shed tears of joy and gratitude, and for the new understanding I have–that Special Needs Land is a country full of love, opportunities to do small but good things, and whose greatest natural resource is its special citizens, who don’t need to symbolize anything. They just need to live, be themselves, and remind us that there is, after all, no Special Needs Land, for it is all around us, existing without fanfare, in no need of a national anthem, a pledge of allegiance, or patriotic demonstrations.

Radha.