A Clear Vision

When my oldest son was born, he was very fat. He had his own sleep schedule, and would not be coaxed into another until he was three. He was terrified to hear the vacuum. So I had his grandmother take him far away, outside, so I could vacuum. Still, if he heard it from another doorway, another house, he would scream.
He choked on milk. I would despair of him getting enough to eat, not knowing he was the fattest baby on the block. His crying when trying to eat would panic me. I fed him all the time, hoping in frequency to compensate for the short meals.
As a baby he tried to pull his face off, repeatedly. I do not mean that he scratched himself. I mean that he tried to hook his fingers into the skin of his cheeks, pulling down with his fingernails, impervious to the pain, until there were welts running down his face. I kept his hands covered for four months. I let his hands out for a time daily until I had to pull his hands off of his face and cover them back up, and at four months I was afraid it would impede his development so I kept his nails to the quick and restrained him, instead. I kept him within an arm’s reach, or I swaddled him really well. Mittens when outside, as the stroller faced him away from me. Cold made it mandatory, anyway.
I held him all the time, massaged him frequently. He wanted to be rocked nearly continuously, and he got so heavy, so quickly, that at nine months I had to break him of it. He did not show much curiosity for anything besides mouthing objects, until he became mobile.
He was slow to turn over. Slow to sit up. Slow to stay up, quick to injure himself with bumps on the head, always falling.
When he began walking, it was deliberate. Changes in surface depth caused him to walk curbs or dips over and over again, as if teaching himself uneven surfaces.
He did not like strangers. Strange faces made him scream. Yet. He would not look at me, he would not call me mommy until a year after he had started addressing other people by their names.
In the car he lasted exactly an hour and a half outside the home. Then the screaming started and did not stop until we reached our doorway.
He could not switch gears, could not switch focus from one thing to another, without pitching a long fit. He hated being locked up in the few rooms he was allowed into. He wanted to get into everything. I let him empty the dressers over and over again, to keep him calm.
I was in a county that had a visiting nurse program for new mothers. The nurses were so happy with his growth, with the fact that I was always holding him, that they used our home for training nurses in the program for a year. They told me horror stories about the other homes they visited, where babies were kept in car seats, nearly all the time.
I took him to the free developmental screening when he was six months old, where the screener was suspicious of his lack of motivation, asking me ¨Does he reach for things at home?¨ Not really, I told her. She never called me to follow up, as she said she would.
I asked the pediatrician why he was so upset so easily. A phase, she told me. As a toddler I asked the doctor what to do about his violent tendencies towards his brother, whom he attempted to strike whenever there was crying. The doctor pretended not to hear me. I asked again. He said ¨Well, since there is nothing else..¨ and walked out the door.

Why did none of these professionals recognize his autism and auditory dysfunction? Was it about our state subsidized insurance? Was it our minority status? Was it because I spoke quietly? What clouded their vision?

I worked through it, anyway. We were connected. I could tell by his behaviour when he was at his limit, and I knew how to calm him. His symptoms got worse before they got better, and now he is much improved. I haven’t stopped, though. I am still trying to make it easier for him.



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2 responses to “A Clear Vision

  1. My BIL left me with the book How Doctors think a few months back. That was profoundly illuminating. It made me all the more grateful for my mom’s advocacy, and all the more sad for how hard she has to advocate, constantly, as the poor single mother of four. (She ended up diagnosing my bro’s vitiligo herself when doctors just ignored her, routinely.) I am sorry you are up against what appears to be the same struggle.

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