[Guest Post] Couches Build Character

My sister Radha’s fourth post about life as an autism mom. 

Just so you know, we are those people. We have a couch in our dining room, and let me tell you, it gets sat on a lot.

I didn’t plan it. I had planned on a dining room that had credible dining room furniture in it. In fact, I spent a ton of time decorating our (couch filled) living room, and envisioned all of us piling in there to chat, watch movies, play board games and Twister, do yoga, and who knows what else. At no point did I say, “You know, there really needs to be a couch in the eating part of the house too.”

The little guy watched the living room decorating process with keen interest. He skittered about when his dad was installing the media cabinet, patted the delivery men affectionately when the new couches arrived, approved the paint color by warbling at the top of his lungs, and almost passed out with delight when he returned from school to find a coffee table in there. Nothing makes him happier than watching processes. They show rather than tell, which is just how he learns.

So the day came. The room was done. I had even unearthed an appropriately stately looking bowl to place on the coffee table. All of us stood about solemnly, studying the tableau, filled with self love and smug satisfaction.

It was then that Gumby decided to show his appreciation for the beautiful job we had done. Surely we meant it as an homage to his leisure time. He shook his head, removed the useless bowl, and promptly placed his wooden toys on the table.

When we didn’t have any kids yet, we laughed over a New Yorker (I think) article about how the 90s generation of parents was so into the granola lifestyle, and everyone had to buy character building wooden toys. And here we were, with a coffee table full of character building wooden toys! We still laugh about that, but it’s more a laugh at our own delusions.

Anyway, the room became Gumby’s safe spot. Everything was where he wanted it to be, and the noise and lighting were kept at a tolerable level in there. We decided to humor him, and balanced it out by not letting the creep of colonialism spread to any other part of the house. To this day, he only enters our master bathroom for a haircut, and never for any other reason, not because we don’t allow it, but because he doesn’t want to linger in a room he can’t manage. Same with his sister’s room. He was highly offended when she wouldn’t let him dispose of a pillow he found ugly, and won’t step over the threshold, which works for her just fine, since she’s a teenager and her room is her shrine to solitude.

At the peak of the Living Room Tyrant’s reign, my husband and I conceded defeat, and moved the old, battered couch into the dining room. We needed a spot to sit, where we could talk and work without stressing out Le Gumb, and where we could dump some comfy cushions. Did I mention the no cushions rule? Maybe I forgot, just because, you know, there were too many rules to remember.

The battered couch in the dining room soon became my mom lair. It still is, really. I don’t care if it looks weird, I love it, and I can keep an eye on my stove, my kid, and the front door. So brilliant, and equally tyrannical! Gumboo and I can be the next Frank Lloyd Wrights, telling our clients how to sit properly and staging their lives just so, requiring the humans to do justice to the architecture and decor, and not the other way around. *cackle*

Lots of things have changed since the room decorating saga, one of which is that the little guy has relaxed some of his rules. We are now welcome in his perfect room, and as long as we don’t upset his sensory apple cart, we can stay. Dad gets banished during allergy season because his sneezes are too loud.

But because the little guy now seeks out people to play with him, and he understands that my dining room couch is my lair, GUESS WHO NOW WANTS TO SIT WITH ME ALL THE TIME? You guessed right. We are constantly in a tangle of limbs, and just when I need to make a phone call or get my work from the printer, I am assailed by Gumby love. He puts his hand on my arm and says Mama, and I am a fool for that kind of affection, so we end up having a romp and laughing till we are exhausted.

It’s neocolonialism at its finest. And it’s also my most secret dream realized–that my son would someday want to engage and play with us, that he would let down his sensory guard just a bit, that he would call me something (Mama makes my eyes fill with tears because I waited a decade to hear it), and if it takes being followed around and colonized to get him to open up, I’ll take it. I’ll redecorate every room in the house if that’s the result we’ll get. Practically speaking, of course I won’t do that, since he would leave us with no pillows and we’d have to stop sneezing altogether. But the sentiment stands.

We work all the time, in tandem with his home therapists, on getting him to be more accommodating and less upset by small changes, and to a large extent, it’s bearing fruit. It’s his essential nature to seek out and establish patterns, though, so he moves on to find another focus for his pattern making. We raise the bar for his behavior, and he raises the bar for our parenting.

Every day has a character building wooden toy hidden in it somewhere.

Radha.

Disclaimer: Gumby is the clay animation figure created by Art Clokey. We use the nickname in affection, and I am not profiting off the name.

[Guest Post] Tribal Identity

This is my sister Radha’s third post about her family life as an autism mom. 

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 truly recognize 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.

[Guest Post] We Are the Burst of Orange Juice

This is my sister Radha’s second blog post about life as an autism mom. 

Just because my son has grown so much in the last few years, we nicknamed him Gumby*. So that’s what I’ll call him here.:)

Years before Gumby agreed to taste oranges, he loved to watch people peel them. If one of us sat down with an orange, he would come running. He would wait till the first piece of peel was off, and the juice, released suddenly, would burst into the air, and then he would laugh and follow the arc in the sunlight with his gaze.

We soon learned to find a pool of sunlight to sit in, staging the whole thing just to entertain him. There’s something so infectious and fun about playing with food just to make an autistic kid giggle.

It was only one instance of how the energy we bring to the room is what Gumby feeds off. We could deny it, rage against it, or submit to it, but in the end, we are the sun and moon and stars for him. He knows when we are happy or just faking it. If we walk into the house still in outside world mode, he asks us to fall onto the couch and tickle him, repeating the request and simulating the action until we surrender to his need for contact. It’s no mean feat to horse around with a lanky, strong fellow who randomly drops his guard, so we have to focus. Otherwise we could end up with a foot in the nose. Ow.

He wants to burrow into our ribs, it feels like. Gradually, we relax into it, and the laughter in his voice tells us we have succeeded in leaving other distractions behind.

It’s the same with conversations, cooking, any household tasks, or guests who might drop in. He watches and listens, runs underfoot, tries to direct and choreograph the actions, and thrills in being part of the group. We give him little chores and he quivers with delight. Guests occasionally get arranged and told where to stand or sit, and most comply with good humor. You can’t drop in Chez Gumby and not expect to be a chess piece in his game of life. He once managed to get a census worker to rub his feet.

Observing him, I’ve realized that the Gumb has us all as balls in the air. He juggles us because he has to. That’s how his mind works. All of us are in the front of his mind all of the time. If one of us leaves the room or changes what we are doing, or someone new enters, all the balls fall on the ground. He picks them up, with the new ball (or data) added on, and resumes his juggling.

He’s a busy guy. This is why he sleeps early, because shutting his room door is when the balls go into their box for the night and he can still his thoughts. I respect him so much for knowing when he’s had enough. There’s only so much OJ and juggling a boy can take. He sleeps the sleep of a hardworking guy who’s earned his rest.

Ever conscious of being the burst of juice in the air, we have learned to be predictable so he can understand our cues. In turn, he’s expanded his definition of what’s acceptable, and so we all muddle on. It’s not as simple as that, I’m sure you know that. Flexibility isn’t his forte, and boundless energy unfaked is no one’s natural demeanor! We all have to dig deep some days.

It’s a huge responsibility to be that burst of juice, that ball in the air. The only way to handle it gracefully is to do what we do without getting too self conscious about it. His understanding of us is very nuanced, and he wants that arc of energy, not the effort behind it.

The answer to the question “What does Gumby want from us?” is simple–everything, but don’t talk about it.

Radha.

*disclaimer: Gumby is the clay animation figure created by Art Clokey. We use the nickname in affection, and I am not making any money off the name.

[Guest Post] Putting Down the Backpack Sometimes

This is a guest post by Radha Lath, who lives in New Jersey with her husband and two children. Radha is my sister. We grew up very close to each other – in fact, being only a year apart in age, we were convinced for the longest time that we were twins. I’m featuring a series of posts that she has written about living with autism. These posts give a wonderful insight into the mind of an autistic child through the eyes of a caregiver.

In my life as an autism mom, I see myself in my mind’s eye as carrying a (fashionably cute) backpack around all the time.

In it, I carry around, symbolically of course, both useful and not so useful things that have become my companions in this journey–patience, flexibility, acceptance, love, and even some guilt, grief, stubborn pride, and apprehensions about the future.

Most days I feel safe knowing my backpack is with me. It’s come to define me. Who would I be without it? I’ve been an autism mom for ten years and I’ve packed this bag myself, with my own hands, stuffed it full of what I need to stay cheerful and still be me. Even the not so positive contents need to be there. If I denied those thoughts, they would still haunt me in my sleep, or storm upon me when I’m beaten down. Might as well accept it all, and carry it as my insignia. I wouldn’t be Radha without all of it. I’ve earned the right to carry this backpack. All of you with special needs kids know what I’m talking about. I have fought a lot of external and inner demons with what I carry around in my pack.

Every so often, though, I set this backpack down. It always costs me a small pang to take it off, so snugly does it fit. But it’s crucial to take the occasional break and be a wife, daughter, sister, friend, and just my own person too.

We have semi regular babysitting, and we’ve done Bollywood movie nights, bookstore browsing nights, random-drives-just-because-we-love-to-chat nights, and theatre nights.

We’ve also done a couple of overnight trips–we took our other child to Six Flags,and we went, just the two of us, to a bed and breakfast in North Jersey–the less said about my raging pollen allergies the better. B and B in the mountains was not my finest moment! We have a planned overnight to the beach this summer, much better for Ragweed Radha.

We keep trying different outings, both to spend time as a couple, and to give our daughter different experiences and time with us. She is the best sister ever, and we do a lot of family activities, but she deserves the occasional ritual-free jaunt.

Now we all know that the backpack doesn’t stay at home. Hah. Of course I pack it in the car with me. I peer into it periodically when I text the babysitter to ask how my son is. I pat it affectionately when she texts me photos. I wear the guilt and shame when he is crying and I talk to her on FaceTime and we brainstorm about how to solve the problem. It’s usually sensory related, and easily solved once we get a look at him. But oh, I torture myself that I am not there! I wrap the scarf of acceptance around me when I forgive myself and admit, after a few hours of fun, that I miss him and want to go home.

Back home again, I wear my fashionably cute backpack again. I don’t always welcome it. It was nice to get a break from it. It felt good to have grown up conversation, and laugh without worrying that I will upset my son’s quietude. It was nice to focus on my husband for a while. And let’s just go on and admit that the little guy enjoyed the break from us too! We can tell from the photos of apple picking, from the remnants of his restaurant dinner on his shirt, and the happy shrieks when the babysitter plays with him.

And yet–we all merge back as a unit, our noisy, twitchy, darling son throwing himself at us for hugs, our family full of perfection and flaws, everyone needing to breathe in his beautiful smile, touched and entranced by how just being all together again fills him with nonsensical, manic happiness.

I do need to put the backpack down sometimes, and remember who I am. But I also need the breaks so I can experience all over again why I am so blessed. Such uncomplicated love that he has for us is a beautiful gift. Such complicated emotions that I carry around daily are my legacy as an autism mom. In this life, if this is what I was meant to do, this particular backpack is the one I was meant to shoulder, then I am a fortunate mother indeed.

Radha

Finding the words…but softly

Painting of Draupadi vastraharan by Arun Prem (Source: https://bodhikshetra.wordpress.com/)draupadi2.jpg

You’re holding court

I know how you do it

I’ve seen you do it

I’ve HELPED you do it

You pick up the skin of the abused

That you tore off piece by piece

and stitched so that it fit just right

You wear the skin of the abused

To hide your own skin

The skin of the abuser

“She left me,” you say

Eyes fill with crocodile tears

“Come to my home. 

Eat my food.

Watch me light my lamp.

Listen, rapt, as I tell you

The tale of her descent into madness.

Pity me.”

“After all I did for her.

She left me

There was another man, you know

Otherwise she would have been with me

forever.”

Draupadi promised me

That my skin will burn on you.

But I will be dancing, somewhere far away

While you go up in flames.

It is inevitable that an abuser will accuse his victim of betrayal when she finally finds the courage to leave. The story of his own betrayal of her trust is not required by society, which is programmed to judge women on the basis of their compliance with social rules, and to shame them when they resist. If you are commiserating with an abuser, know that you are part of the problem.

Or give me death: The tyranny of happiness

On Deepavali this year Jeremy casually slipped me a gift-wrapped book when he arrived at my party. This was two months ago, and at that time I made the usual noises of gratitude and you-shouldn’t-have that one does in such interactions. The following morning I opened it and Instagrammed it. As one does.

IMG_3886

But it was only this evening that I humbled myself, made myself vulnerable, and gave it the respect of reading it. It has been the most difficult year of my life, and mounting depression has led to thoughts of suicide. There are days when all I can do is sit and stare out the window. (And those are the good days.) Or scroll mindlessly through my Facebook feed, looking at all the exhortations to be grateful, to make yourself happy, to view your obstacles as stepping stones to happiness. I have tried them all. I do have a lot to be grateful for. I have written the list. It hasn’t helped. Because it was not a lack of gratitude that broke me. So how can a surfeit of it fix me? Same thing with all the how-to-be-happy directives.

So you can perhaps understand with what cynicism I approached the book that Jeremy had given me – “On Happiness”. It wasn’t that I expected the book to be about how to be happy, or what happiness was. Which philosopher, playwright, poet, performer worth their salt would waste their time over such a trite premise? No, my cynicism was because so many works like this end with the nihilistic idea that there is no such thing. And I figured that it would probably deepen my depression but what the heck. Might as well go for broke.

The book has at its core a play entitled “Boxes” by Kenny Png and an essay by Jeremy Fernando that deals with the theme of happiness foregrounded by the play. As Jeremy explains, the problem isn’t happiness per se but the totalitarian nature of any prescription for the pursuit of happiness. The first thing Jeremy does is to question the conflation of happiness and freedom. There is, he says, a perverse freedom in the lack of responsibility of each individual subject in a totalitarian state, since all responsibility belongs to  the state. The self is free from blame from anything external to the state. Conversely there is an ironic lack of freedom in a democracy because each subject is responsible for any decision (however bad) made by the leaders they elected. Jeremy notes that according to Zizek, happiness lies in the gap between the ability to choose, and the actual consequences of real choice. The idea, therefore, is that happiness exists as possibility. Neither can we make ourselves happy nor is happiness to be found in others, but in the space of possibility between the self and the other. Perhaps this is why love is most keenly felt in yearning. Not in possessing.Perhaps also this is why the idea of freedom inspires while its reality (in whatever halfway form) is terrifying.

Peter Van De Kamp’s afterword adds a valuable distinction between the Aristotelian notion of contentment that is often mistaken as his definition of happiness, and the actual definition of happiness. The former (contentment) requires self-control. The latter (happiness) implies being favoured by fate. So it is a matter of chance. Thus any attempt to buy happiness, to make oneself happy through buying ideas or books or things, is mere superstition. The things themselves are no better than talismans. We were not born to be happy.

This book is more reassuring to me than anything I have read so far on how to BE happy. It isn’t that we can never be happy, or that there is no such thing. But that that isn’t the point of being alive. If happiness is always only a possibility, then really it is our UNhappiness that makes us human. So all this time I’ve been basically acting out a scenario of “give me happiness or give me death”. Asking it of some nameless higher power I’ve never admitted to believing in and never really felt a connection to. Now I wonder if it is the tyrannical nature of happiness – and its many advocates – that presents death as the only alternative.

The importance of being angry

Patriarchal dreams don’t die an easy death. They don’t go quietly into that good night. They have to be stomped out ruthlessly. And you have to be prepared to burn with anger.

Patriarchal dreams are dangerous. They are within us. Infused into us from the day we were born, through our childhood and into adulthood through the entrapment of community closeness. Be a good wife, we are told. Perform sacrifice and submission, we are shown. Illusions of agency are woven. The woman who is allowed to speak selectively never sees how she is silenced. Tell her she is oppressed and she will curl her lip in contempt, throwing the weight of her corralled and focused intelligence against you. She will be the strongest defender of her own oppression, reframing it as feminine power.

Patriarchal dreams are powerful. They are the reason you have no financial independence, no space for self-actualization, no air of your own to breathe. Asking for any of this means you are selfish. Expecting it makes you itchy and uncomfortable.

Patriarchal dreams do not sit well under skin that longs to be free. Be angry. Stomp hard on that which you think has made you YOU. Don’t worry. It is not you that you are killing. Be ruthless. Your patriarchal dreams do not define you. They are not you. They do not belong to you. Be angry. That is the most important thing. Be angry. Only then can you be free. Being oppressed leaves you with no emotional energy. I understand this. Anger is the only way. Pure, irrational, frightening, destructive, self-immolating anger.