Month: May 2016

[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.