Adventures in Autism
5 years ago
"MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.
I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.
How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?
Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.
...And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever."
One day, the children had gathered themselves, laughing and talking, into a circle about a basin of water containing some floating toys. We had in the school a little boy barely two and a half years old. He had been left [Page 92] outside the circle, alone, and it was easy to see that he was filled with intense curiosity. I watched him from a distance with great interest; he first drew near to the other children and tried to force his way among them, but he was not strong enough to do this, and he then stood looking about him. The expression of thought on his little face was intensely interesting. I wish that I had had a camera so that I might have photographed him. His eye lighted upon a little chair, and evidently he made up his mind to place it behind the group of children and then to climb up on it. He began to move toward the chair, his face illuminated with hope, but at that moment the teacher seized him brutally (or, perhaps, she would have said, gently) in her arms, and lifting him up above the heads of the other children showed him the basin of water, saying, "Come, poor little one, you shall see too!"
Undoubtedly the child, seeing the floating toys, did not experience the joy that he was about to feel through conquering the obstacle with his own force. The sight of those objects could be of no advantage to him, while his intelligent efforts would have developed his inner powers. The teacher hindered the child, in this case, from educating himself, without giving him any compensating good in return. The little fellow had been about to feel himself a conqueror, and he found himself held within two imprisoning arms, impotent. The expression of joy, anxiety, and hope, which had interested me so much faded from his face and left on it the stupid expression of the child who knows that others will act for him.