Latest update: November 8th, 2013
As told to Gila Arnold
Autism. We’ve read about it. We’ve heard statistics: one in 88 children in the U.S. is born on the autistic spectrum. Even without knowing the hard facts, we sense that it is a growing phenomenon. After all, there seem to be more and more programs and specially-trained therapists devoted to working with this particular special-needs population. There is a good chance that we know someone who has a relative on the spectrum.
But unless we live with an autistic child, sharing in his life, day in and day out, we cannot begin to appreciate what it means to have a child with autism.
It was this thought that motivated the Goldberg* family to contact this writer; with the goal of giving the larger community an inside peek into this world.
Menachem, an eight-year-old, blue-eyed, adorable boy, was diagnosed with Pervasive Developmental Disorder, or PDD, at the age of two. PDD refers to a group of disorders characterized by delays in the development of socialization and communication skills. The most common and well-known of these disorders is autism. While there is a wide range within this diagnosis, Menachem is at the lower end of the spectrum.
However, there is more to Menachem than meets the eye.
“He is not mentally retarded, just undeveloped,” says his father, Dan. “Although he is non-verbal, he can understand, problem-solve, he can manipulate us and his environment to get what he wants.”
And underneath, Dan is convinced, there exists the same deep desire for connecting with others that all of us have. More desperate, perhaps, because the desire is trapped inside a mind that doesn’t know how to reach out.
This series of articles will be Menachem’s story, the story he would want all of us to understand, were he able to tell it himself. It will be the story of his parents, siblings, and caretakers, with the goal of giving us insight into Menachem’s world.
But it will be more than that, because the story of raising a special needs child is really the story of raising any child, only magnified a thousand-fold. The patience, strength and determination required by the parent of an autistic child are traits all parents should be emulating. All of child-rearing is about finessing our own middos and reactions as much as it is shaping our children’s. But when the child is a low-functioning special-needs child, and the parents must learn to limit what they can reasonably expect of him – then their expectations of themselves must rise accordingly.
Part One –
The Father’s Story
It’s a clear, springy day, and I’m taking a walk around the block with Menachem. Since nothing with Menachem is ever simple, not getting dressed, eating meals or even using the bathroom, I know that at any moment the quiet father-son scene can be shattered. I hold his hand as I talk to him about things that I imagine will hold his interest. I can do no more than guess, since eight-year-old Menachem is non-verbal.
Without warning, Menachem wrenches his hand out of my grasp and runs off. He is having a meltdown, and I brace myself as I trot after him. With Menachem, situations go from zero to sixty within seconds. And, indeed, he runs off the curb and into the busy street next to my home, and proceeds to lay himself down right smack in the middle of the road.
It doesn’t take long for the first car to come barreling up the street and screech to a halt. Before long, there is a row of honking cars and angry drivers. I don’t need them to open their windows to know what they are shouting. Their accusing looks are all too familiar to me. What’s wrong with you? Why can’t you control your son?
Believe me, I wish I could shout back. If I knew how to control him, I would. Even better would be if I knew how to anticipate these episodes and be able to nip them in the bud. But I can’t, and I am just as lost in these circumstances as anyone. Menachem can’t be cajoled, reasoned with, or even threatened. Overly large for his age due to his medications, he is too heavy for me to simply lift off the street. And so all I can do is stand helplessly next to him in the street, as a portion of the agitation that has taken my son in its grip, takes hold of me as well.
I am frustrated, and embarrassed, and, yes, annoyed with Menachem, though logically I know that it is not his fault, that he can’t help the way he is behaving, any more than a baby can be blamed for throwing a tantrum. Menachem functions on the level of a sixteen-month-old, albeit with the strength and speed of a much older child, which makes for a very difficult combination. My wife has trouble restraining him, so it falls to me to be in charge of him, from the moment he gets off the school bus until he goes to sleep (night time is a different matter altogether!). Being in charge of him means more than just keeping him in constant sight; it means being within arm’s length. Always. As I know all too well from experience, Menachem is in constant motion, and one second’s oversight can result in massive mayhem. We’ve tried several times to get household help, so that my wife and I can focus more on our other children, but inevitably, after about two weeks, the hired help would throw in the towel, and we’d be on our own once more.
As I stare at my son, lying in a stubborn lump on the asphalt, both of our tensions rising in the face of the noise and bedlam we are creating, I suddenly pull myself back. There is nothing Menachem can do to get himself out of this situation on his own; Hashem did not give him the tools to do so. So that means it is all up to me. In order to move himself, Menachem needs to calm down. And the only way for him to calm down – is for me to calm down.
I take a deep, stabilizing breath, force myself to ignore the ambient riot, and place a gentle hand on my son, trying to give over a sense of calmness. At long last, he quiets down, and finally, he gets up and we walk together back to the sidewalk.
For the drivers in the backed-up cars, the incident most likely provides grist for a heated retelling at home, capped off with a “Can you believe there are parents like that out there?” or perhaps with a more understanding, “The kid obviously had problems – thank G-d it’s not my son.”
But as for me, I make my way back home, gripping my son’s hand tightly, just another typical day in caring for Menachem.As told to Gila Arnold
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