The Messenger

Do you remember the person that gave you the news?

In this story, and excerpt from A Regular Guy: Growing Up with Autism, I share my reaction to mine:

Wanting to leave no stone unturned, I followed the advice of the presumptuous mother in the speech therapy waiting room and scheduled Matthew for an evaluation with a developmental pediatrician just a few weeks after our initial meeting with Dr. Hoffman.

“Isn’t this overkill?” asked Peter. “He was just tested by Dr. Hoffman. All this testing has got to confuse the poor kid.”

“But a developmental pediatrician will look at Matthew’s development from a medical perspective and make referrals to other specialists if needed,” I said, though I agreed that it was a little ridiculous to test him again so soon.

Matthew not looking when I call his name.

Matthew not looking when I call his name.

After testing Matthew, the developmental pediatrician started by giving us the most encouraging news of all. “Many areas of his delay are quite mild,” he said, “and Matthew has splinter skills, which are areas where he is at or above age level. With continued focus on speech and language, I’m optimistic about Matthew’s prognosis.”

Peter and I looked at each other and pumped our fists. Good news!

“This is wonderful!” I exclaimed.

“The fact that a significant delay exists is evident,” the doctor hedged.

Uh-oh.

He took out a pad of paper and a pen and sketched an arc.

“This arc represents a scale,” he said, making a small mark at the bottom of the scale. “This is where Matthew scores on the Stanford-Binet Intelligence Scale.”

I stared at the drawing, not comprehending what the doctor was trying to tell us.

“That looks low,” said Peter.

“He is in the second percentile,” the doctor replied.

“That’ll change once the language improves, right?” I asked.

“No, this is an actual measure of Matthew’s cognitive ability,” he said, still pointing at the two-percentile mark with his fancy pen.

“But you said we should be optimistic. You said he had splinter skills. And he is now seeing a psychologist twice a week for play therapy. Don’t you think that maybe it all just hasn’t clicked yet?”

“I don’t have a crystal ball,” he said, “but Matthew is in an optimal spot at the moment. It would also be in his best interest for you to consult your local school district about placement in special-education classes. You should also contact the Regional Center of the East Bay. They provide services for children with developmental disabilities and their families.”

“Wait a minute,” I started, but Peter held up his hand to silence me.

“Just so we’re clear,” he said. “You say that Matthew has made substantial growth in all areas. But when I look at this scale, it looks like he’s retarded.”

“Dr. Davies said he wasn’t retarded,” I broke in, “and he doesn’t look retarded. He just doesn’t test well. Dr. Hoffman is going to draw him out—”

“Lau-ra,”Peter said, trying to calm me.

“OK,” I said, jumping up, “we’ll talk to the school district and the regional. . . whatever, but you know what? I’m kind of upset. We can talk more about this another time.”

Peter and the doctor sat frozen in their chairs. They looked afraid of me.

I gathered up my purse and my blank notepad and rushed out. Peter followed me to the car, where I was pacing angrily.

“Let’s walk around the block,” I said, shaking. “I’ve got to move.”

Peter tried to take my hand, but I refused it.

“I know, Laura, this is a big blow.”

“No, it’s not! He’s got it wrong! The problem is that all these people have such different ideas about what’s going on with Matthew and it’s making me insane! First, it wasn’t autism or retardation, then I get used to the idea that it might be autism, but good news! Dr. Hoffman thinks he can draw him out of it.And now this guy says he’s a retard!” I started to laugh, a crazy, stress-driven laugh headed toward hysterical tears.

“I know, Laura,” said Peter. “It’s so bad, it’s almost funny.”

“And one last thing,” I said once I had pulled myself together. “I will hurt the next one of them that uses that ‘crystal ball’ line.”

***

Who was your messenger?

 

About the author

Laura Shumaker is a nationally recognized writer, autism and disabilities advocate. Her essays have appeared in many places, including the New York Times, CNN, NPR, and in a popular autism and disabilities blog for The San Francisco Chronicle. She’s the mother of three terrific sons, and her oldest son, Matthew, is the subject of her book A Regular Guy: Growing Up with Autism.

Comments

  1. Kathy O'Bryan says

    Hi Laura, I remember that day all too well when I was told about “concerns” that my son had autism. My son was at his 4 year check up, but I think that I should back up a bit. My son started to go to a pre-school about 3 times a week. My Mom would pick him up during the day and then I would get him from my Mom’s when I got out of work. I received a phone call at the end of the first week. It was from the director. She told me that “it is a madhouse down there” and that my son was running all over the place, climbing on tables and shelves and turning lights off and on and that I needed to pick up my son. In shame and disbelief, I picked up my child and brought him home. I spoke to his teacher within the following days and was told that he could only continue to come to the pre-school if was with him. With reluctance I did manage to go with him for about a week during pre-school. During this time my son had his 4 year check up with his pediatrician. The first thing I was told during the 4 year old checkup was that “they had concerns” that my son had autism. I am pretty sure that my mouth dropped! I expected them to say something about ADHD, but never imagined that they would say the word “autism”. The nurse practitioner gave me some names of who to see, finished the appointment and sent me on my way in a state of shock and disbelief! ~ next chapter to come ~

  2. Kathy O'Bryan says

    I remember who my messenger was all too well. It was my son’s pediatrician during his 4 year check up. That was in February of 2006. I should go back a little to explain. Shortly after my son turned 4 I put him in part-time at a daycare/preschool just so he could get some social interaction. He was only taken care of by family up until this point. He was only in the daycare for half days. I would pick him up by 1:30pm. At the end of the first week I received a phone call by the “director” of the daycare. I use the word director very loosely. I was at work when I got the call. She told me that I would need to pick up my son right away. “It was a mad house down there”, she said. “He is running all over the place, turning on and off the lights and yelling”, the director went on to explain. Not knowing what to think I just went to pick up my son. On the way home I called and spoke to his teacher. She confirmed what the director told me, although, I still feel to this day that this director needs to take some classes in being a human being and talking to Moms and Dads about their children. I digress… the teacher was very kind in the way she spoke to me. She would only tell me the facts as to what my son was doing during the day and then she let me know that I would need to be with my son at the daycare/preschool if I wanted him to continue there. She also suggested that I call my local elementary school to talk about an evaluation. I called my town’s elementary school and spoke to the Special Education teacher, although, at that time I did not realize she was the Special Education teacher. We scheduled some evaluations. I went back to the daycare/preschool with my son for maybe about a week. That week was a nightmare. My son was all over the place, wanting to climb everything and yelling for no reason. He was insistent on getting the CD player that was on the highest shelf and I was constantly trying to steer him away from that. The turning point for me came when one of the daycare workers rolled her eyeballs when my son was a little louder than the expected “normal”. I left that day and never went back. My son was going to have his 4 year check up soon so I knew that I would discuss all of this with his doctor. I was not worried. So now comes the day of his 4 year check up with the pediatrician. We were seen by the Nurse Practioner whom we saw many times before. I will never forget her words that day, “we have concerns that Robby has autism”. That statement hit me like a ton of bricks. I was truly blown away by this. I remember telling her that I thought they would see he had signs of ADHD but never once imagined that they would think he had autism. So, they knew. They knew longer than I did.

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