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The Moment My Son With Down Syndrome Was Also Diagnosed With Autism

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You walk outside with the psychiatrist into the spring sunshine of the clinic play yard. With all the testing over, what remains now are only the words. You watch your little one pass by sand toys, slide and swings to sit on a sunny patch of concrete.

In typical fashion, he picks up a leaf and begins to shake it back and forth. Back and forth. You take a second to admire his sweet face and the blue eyes that you adore. You hear the doctor shuffle her papers and pivot toward you. You turn as well, keeping your face unruffled and your mouth relaxed. Breathe. You admire her — the ironed white coat, the nice makeup. She looks up from her notes and begins to speak.

But before her words arrive, you blink into the slanting morning sunlight for a split second, and it occurs to you: This is my last second of not knowing. Although, really, you almost do know. You just don’t want to hear her say it.

Definitely do not think of your husband, of your marriage, your other children, of your unfinished dissertation, of the avalanche that feels like it’s gathering right above you. Forget about parent-teacher conferences and kids’ volleyball games and what you were going to make for dinner tonight. It must all wait for now. Do not think about anything but getting through this moment.

Feel the sun.

She has begun: “Our testing process shows that your child has severe autism. His delays are not similar to those that most children with Down syndrome would normally experience.” As she enters the thicket of explanation, you look carefully at her hazel eyes, at her short beautiful haircut, now being fluffed by the San Diego morning breeze. Your eyes move to her medical name badge, and you wonder how this kind of thing is for her, for only the the two of you are present in this weighty moment that will change all the minutes and years that will come afterward. You look at her for what she truly is: the only other witness to the arrival of your changed life.

Her psychiatrist’s manner is steady, even soft. She delivers the news with a practiced, compassionate firmness that suggests many such past encounters. You attempt to follow the direction of her words, which are now traversing alien, mountainous terrain. She briefly describes the methodology of her testing, the results of the classroom observations and what the teachers’ assessments showed.

The voluminous pages of bubbled-in forms that you returned to her last month are acknowledged, as well as the results of his hearing tests. She begins to mention the details that you already know: his inability to imitate others or engage in imaginary play, his lack of a single verbal or signed word despite his five years, the fact that he needs no more than four hours of sleep at night.

She repeats back to you the reality that you sometimes find him, inexplicably, outside the house in the mornings, whimpering on the cold lawn. A perplexing night wanderer who can open doors yet can’t tell you why.

She talks about all of the things that he seems to not desire: friends, toys, compliments. That he has no apparent desire to show you a car he has unearthed from the depths of the sandbox or a dandelion plucked from the lawn.

Suddenly, you realize she is describing your life with him in such vivid, choking detail that you wish she would stop. Your chest tightens. She stops talking and looks at your face.

As you observe your child, who is still crouched in the play yard, shaking a leaf before his fathomless eyes, you realize that soon this moment of encounter with the white-clad psychiatrist will be over. She will be gone, and you will be left alone with the full weight of her words. Resist the temptation to cue the heroic narrative, no matter how much you might need it. And refuse to panic, yet. There will be time enough for both heroism and panic later. For now, stay focused on the matter at hand. Release your breath and feel the sun.

She is about to shake your hand and walk back to her office — and you to your car and your now changed life. Before you both do, ask her: What is the best advice she can give? Listen as she tells you that you’re going to need to establish a community of caregivers to help you, and that creating a new email account devotedly solely to his diagnosis might be helpful. Take the cards of the educational advocates that she offers. Make special note of the way in which she describes autism as a vehicle for getting him services that you now know he will not progress without. Hoard these snippets carefully, for although they do not comfort you, they are the best that she knows and here you will begin.

In the car, buckling his car seat, you realize this is ground zero, the beginning of the new, unwanted thing that — now known — might lead to help. All at once, you remember another morning, five years ago, when you were also in the car, when the phone rang and it was the genetic specialist on the line to tell you that the results of the amnio were in and your baby had Down syndrome.

You drive home. Get a Diet Coke. Lie on your bed. You cry while you watch him shake a spatula back and forth, back and forth, before his eyes while crouching in the corner of your room.

Don’t rush, but when you are ready, think back on the day of the amnio when you were pregnant with him. The day they took the sample they would use to test for Down syndrome. Recall the feeling that you had as they pushed the long needle through your skin and into your belly; how as you looked at his small silhouette on the ultrasound screen and all you could think was, “Hey, it is OK, I love you. I love you even if. I love you anyway.”

Realize, suddenly, that it is still true.

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Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

Originally published: November 18, 2016
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