I have something to say

I have something to say.

I have been trying to say this for a few months now. It is difficult for me because I disintegrate while saying. But my ability to compose myself afterwards is better than before. This blog has gone too long without writing about the reason it came about. So here it is-

My son has autism.

My loving son has autism. He is 10 years old, soon to be 11.

I cannot explain what is difficult about “autism” being stamped on a vibrant toddler with the unspoken force of everything the label brings. I cannot explain the subsequent raw journey through the labyrinths and borders of understanding, fortitude, compassion, love, despair, hope and respect, for years. The weight of this used to roll down as tears every time I told someone or stayed heavy in my heart if I didn't tell. But how can I slip it in any conversation? It is like casually taking out my heart and saying, look, this is my heart.

This post isn't about how I feel about our autism. This post is a summary of my journey.

I.

It began casually enough. A couple became parents to an adorable baby. A house in a valley. A small blue swing  in the yard.

“Does he have autism?” the hairdresser asked with a big smile. Not yet two years of age, my son, M, had cried at the hair cut. His then pediatrician first said “No, look at his terrific eye contact, it is not autism”. I was aware of his quirks, they were all cute.  His overall symptoms did not fit. He just needs some time, I thought, but I put my back-to-job search for which I had gotten some leads, on indefinite hold. After all, his father was a late-talker. (I wasn't to know that one quiet morning the sudden realization of not just quirks would come to find me. And that it would be a little boy who would come to his distraught mother with shocked tenderness)

Then the sliding happened. There were two blips before, they perplexed me but I forgot about them in the giddiness of early childhood. But the slide at about 2 ½ was different. Is this real or am I imagining it? Is this a phase? We consulted experts, ran from pillar to pillar, got whatever appropriate help there was. With every evaluation M was becoming part of a sum, assessed only for his skills. Then came the slide at 3 ½. His symptoms increased. He was the same little boy, full of life, but his symptoms changed.  What am I doing wrong? Confusion, disbelief and anxiety rained on us even as we emptied our pockets and wrung out our souls.

**** 

We continued with therapies and special education with hope in every breath.  M loved his preschool; he wore his little backpack with a small lunch inside and went off in the mornings. I volunteered at school, worked with his teachers, his therapists and the aides. Our home changed, we changed. Vestibular proprioceptive articulation motor-planning now became common words.  

By kindergarten M’s frustration was increasing. He was left behind. We were spending much of our time helping others help him. It seemed to me that he could either learn or cope in a setting. Obviously, he preferred to cope in a class of varied special needs where his sensory system got overloaded. He learned more with the few things we calmly tried at home; even his school staff could see that (and were surprised). Sensory integration was a big part (regular children seamlessly integrate incoming sensory information and learn to give a regulated verbal response well before starting school. The integration comes off like a symphony; we only see and cherish the outcome, we barely know how this works).  How to help with something we don’t know much about?

Autism, maybe the most complex of all disorders, affects about 1 in 50 children, mostly boys, and usually starts showing signs by 1-1/2 - 4 years of age.  I wonder what the statistics of South Asians with autism in Bay Area are; the numbers seem to be high. We come from a culture equipped with few skills to deal meaningfully with special needs. So we learn while on the go.

Everybody’s autism story is different, with some outward commonalities. No known medical cause, no known cure. A few theories exist for both but fall away under closer, calmer look through time. Some therapies exist but fail to help all children. Some lucky children respond beautifully. Symptoms are not always a marker for who will respond. Sometimes a happy parent reports success with a novel method- even when safe, we do not know if the result can be repeated. Science has much catching up to do. Parents just carve a way through all this to help the child and manage. If the therapies fail to reach a child, there’s no hand anywhere to lift him up. There’s nowhere to go. You live your story, 24/7, 365.

II.

An extremely difficult decision- I started homeschooling.  The idea was to manage M’s learning in a more regulated environment. I registered for a private school (PSA, per Law in CA) and named it ‘Creative Minds School’ in the fall of 2009.

It was a difficult year. M wasn't comfortable in his body at times. I talked to other homeschooling autism moms and realized that we were dissimilar even within this field. We retreated into a smaller world that was more meaningful.

**** 

M's world slowly became my world. I moved to his rhythm. We went for walks, picked acorns and pine cones. Counted them. Felt the texture (he loves that). We listened to music. He liked stickers so we used them. Used some toys. He liked colored paper clips so we did a variety of things with them. Talked singsong. Used voice for affect. Communicated in silence.

I made up my own worksheets, starting with math. If a concept was unclear, I tried it differently- cut out steps, changed print, color or spacing. Or tried it a lower level or a higher level. Framed the concept in a way that didn't need a verbal output. Tried different visual placements (this helped a lot). Presented an idea in many ways. Repeated everything. Laughed over silly things.

It seems to me that I took things that interested him and built around them, very slowly. He led an activity when he very interested. Sometimes he liked the structure of Q & A of a sheet, like math (shown by fleeting shy, proud smiles). Sometimes he was reluctant to do anything and preferred his chair and music or the swing in the yard.

Moved to workbooks (I picked ones that didn't have much fluff).  Most importantly, we ‘learned’ depending on where and when M was comfortable. Be it morning or not morning. Sometimes it was in the afternoon. For 5 or 15 or 30 minutes. In the yard, at the dining table or a proper study table in his room. After each small session he liked to play on his swing or trapeze (I had one fitted in the family room) or the trampoline. Dad took him (and still takes him) to outings every day. M loves being outside, they became outdoor-buddies. Before bedtime they played some more. Had a weekend playgroup, a class here and there, family & friend visits. We went to museums, zoos, gardens, the usual stuff, all managed within our autism. There were still instances when we had to turn back and abandon an outing or cut it short.

There was some progress. We were happier. We were also still going in circles. They were bigger than before, but they were still circles. But there was progress. Then sometime in late summer of 2010, I dropped my guard. Long story short- I became even more of a partner. I learned to wait more, unlearn more of my expectations and accept all outcomes.  This happened over a few months. Maybe I was seeing an undercurrent of something and wanted to slow down. I always knew, even as a baby, even as a toddler, that he saw and learned differently. It was easier to observe this before the slide at 2 ½ because the sensory issues were lesser. How can I forget? They come back to me in every dream.

**** 

I kept trying different things without a fixed agenda distributed among scheduled activities. Some happy accidents happened. I wasn't looking for them; so I said huh and moved on. They took a while to register on me and to assimilate into our learning. Then things started adding up, which I only saw in retrospect.

I don’t know how to describe what happened next, it all was so fast. I’m going to make it very short:  In early 2011, a pattern of learning style began to emerge. By fall of 2011, he was typing sentences and more.  Slowly I began to see his mind through his typing- I began to understand his unique way of seeing the world. How can I describe my awe? I have no words.

Our world started to expand back a little. We joined a Charter Homeschool in fall of ‘12. We were back in a school system, with access to benefits- curriculum, state standards, a library, an advisory teacher and some classes. With school came some tests, in which he earned some wows.

We still have a long way to go; since schooling is only a part of the whole. It’s just that we find ourselves on a small road now and are getting used to it. 

It is a mystery how the ease and need of communication, which humanity takes for granted is changed in autism (and unfortunately, most of us equate the ability to communicate with worthiness). The pathways in the sensory-motor-coordination of eliciting an answer A to a question Q with the associated body language get changed to different degrees in autism. But this is only the collateral, autism is more than that. While M is continuing to work on his speech (which is as difficult as it is dear to his heart), it was his typing that opened a different road for us. His ability to learn came into the open only because of separating it from the requirements of a verbal output. 

(And yes, after all his home-haircuts, M has been going back to the hairdressers for 2-3 years now. He does quite well. We did not understand the difficulties of the sensory experience in a haircut when he was 2).

III.

Autism changes lives. I changed. My worldview changed. My relationship with family and friends changed. Some drifted away, some came closer. Much advice and judgment comes my way (moms especially are found at fault for what they do and don’t do). It is hard to keep up with everything in house and life.  My health wavered. Our marriage changed. Much of our energy goes into autism (of course, this is dependent on how much autism a child has and a family’s support structure). I carry an accumulated bag of emotions- sadness, anger, regrets, fears, anxiety, gratitude and hope. But the hardest of all – the hurt in that - a child, an innocent child, has to work so hard to navigate the basics of the world, something which should have been a background foundation for life. Then there is the bias against him. Even as so much is unknown about autism, people are quick to conclude the status and fate of a child from even a different neurological tremble.

Autism also gives back. It is unlike any other disability. Your child is not only different; he/she perceives the world differently and is motivated differently. There is the joy that only special needs children give out and then there is the purity of the autism mind. There is peace in it. Joy and peace, M gives that to us and to many others who know him. I am grateful for being able to work with him. 

We are a special-needs family, we move to a rhythm of a slower and kinder world. My happiest moments come quietly, when M and I are communicating and learning from each other. Or even when I’m simply sitting in the afternoon sun in the yard and say, he is playing with his scooter and makes a graceful turn around me with a smile. When we are both quietly listening to music. My time stands still in these moments.

This blog came about in ’11. Most of it was trying to make sense of our place, by exploring an angle dwelling in my mind every month or so. I stand on slippery ground- what is my voice, do I even want one? I am unsure. I feel exhilarated on good days and fade away on days when M isn't doing well. So what can I have to say from where I come? I hear a false note in most of everything I say. 
Inconsistent and Incomplete: inconsistent because I'm learning, incomplete because my understanding will remain that. But the love M gives me, frees me. It frees me from the burdens of expectations- of failure and success, of any insight and my mistakes. Just staying true to him brings me balance.

So you see, this isn't about me at all. It is about a boy who has come here, to this spot, after a long walk, against odds.  What he has is as precious as fragile. It may not be much to show to the outside world. His path is long, it is narrow, and few people walk there. He wishes to keep walking. He has hope, he has trust and he has light in his eyes.

I asked him if he is okay with me writing about him in my blog. He is.

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