When your worst fears become reality

I love Nick for exactly who he is. As Shakespeare says, "Love is not love / Which alters when it alteration finds / Or bends with the remover to remove / O no! It is an ever-fixed mark." Autism does not alter my love for him, and I do not wish to remove any of who he is. I accept him for exactly who he is: a beautiful, joyful little boy who doesn't have many words to communicate with me.

My fear, though, is that the lack of words would keep me from knowing if something was wrong. What if he was sick? What if he was in pain?

What if someone hurt him?

Last night around 6:20 the principal of my boys' school called me. She needed to talk to me. She asked if she could come over to my house. She said she'd be here in ten minutes.

For ten minutes I worried and wondered. Did Noah get into trouble at school? Did Nick bite one of the children in his class? I feared she was coming to tell me that one of my kids was being expelled.

Instead she told me that it was an adult who had done wrong.

It wasn't the first time we'd had a conversation like this, about the same teacher. During the early weeks of school, while Nick was still absolutely freaking out about the transition to kindergarten (routines and consistency are so important in autism), Nick had gotten upset about a door. It seems like a simple thing, I know. The class was in the computer lab, and the computer teacher's office door was cracked open a little bit. Nick is horrifically OCD about doors--they NEED to be either all the way open or all the way shut--but he didn't have the words to tell this to the teacher. Instead of nicely sitting at a computer, he screamed and tried, over and over again, to run to the office door and shut it. His teacher tried to get him to work. She sat down in a chair in front of a computer and put Nick on her lap. She wrapped her arms around his torso to keep him still (basically restraining him), and my child is afraid when he is restrained. He bit the teacher.

And instead of gently pushing into the bite to free herself, she hit his face to get free. In doing so, she caused a lot of damage to herself--Nick's teeth tore at the skin and she began to bleed.

I listened to all of the perspectives. I talked to the district about trainings for dealing with aggressive behaviors. I provided options that work when Nick is upset. I thought that maybe, just maybe, the teacher didn't think clearly in the panic of the moment of being bit and that having trainings and options for dealing with Nick's tendency to bite when he is scared would make the difference.

Ten days ago Nick's class was in the library. Nick was sitting in a chair, as were all of the other children, and I'm completely thrilled that he was sitting along side his peers--this is major progress in our Autismland. Apparently Nick was swinging his feet, which all kids do, autism or no. The teacher grabbed Nick's feet to hold them still, grabbed them so hard that she threw my child to the floor. For swinging his feet in a chair.

He could have gotten a concussion when his head hit the floor. He could have broken his tailbone when his bottom hit the floor. And he wouldn't have been able to tell me any of it.

The teacher's responsibility when any child gets hurt is to report it immediately. Immediately. The teacher didn't. Eventually someone else who was in the library that day made their way to the principal and shared what they saw.

The district is promising "disciplinary action." But that doesn't help. My stomach still feels sick. How many other times did this teacher hurt my son in the ten weeks he was her student? How many other children have been hurt by her?

How many traumas have been unspoken?

The district is making new protocols and policies, and adminstration is making frequent visits to the special ed room. But none of it makes me feel any better.

My child was hurt, and I wasn't there to protect him. My child was hurt, and he didn't have the words to tell me about it.

There's nothing worse than that.

The Most Vulnerable Population

Here are a few horrifying statistics for you from Darlene Barriere:

• Mencap, the largest charity in the United Kingdom for children with learning disability, reports that 1400 new cases of sex abuse against people with a learning disability are reported per year in the U.K.--only 6% of which reach court. Conviction occurs in only 1% (Mencap, 2002³)
• For girls with developmental disability, the average estimate for sexual abuse victimization was 1.5 times higher than the general population rate; for boys with developmental disability, the rate was roughly double (McCreary Centre Society, 1993, p. 9⁴).
• 83% of women with disability will become sexual abuse victims with disability in their lifetime (Alberta Committee of Citizens with Disabilities, 2002⁵).
• One hundred sixty sex-related incidents were reported at the Washington State School for the Deaf between September 1998 and February 2001. At least 100 other incidents including rapes, attempted rapes, and dozen of molestations were reported (Seattle Post Intelligencer, 2002⁶).

I have two sons with autism. My older son is higher functioning so I don't worry quite as much about him being sexually harmed, but my little Beh . . . he doesn't have the words to tell me that someone has harmed him. I'm deathly afraid of someone hurting him and me never knowing about it.

Our recent experiences with a stranger heightened those fears.

My older son started attending a social skills group at our local autism resource center. The first few weeks Dad took him, but when the semester ended I took over. During the sessions, I hung out with Beh in the waiting room. At first I didn't pay much attention to the others in the waiting room because I was so focused on Beh. Keeping a child with severe autism happy in a very small waiting room is quite an undertaking, so I devoted all my time to engaging Beh to make the time fun for him. I spoke to the other moms in the room only a little--they were awesome about complimenting me on how great I was with Beh, and their words meant the world to me . . . because as fellow autism moms, they knew.

And then, during a session a few weeks ago, I got more involved in the conversation in the waiting room.

A couple of the moms and I got to talking about education issues--a major thing for all spectrum families--and as we spoke there was a man, who'd stayed mostly quiet, who joined our conversation every now and then. He was older and wasn't a parent; apparently he'd befriended a family and had brought their son to his social group. I noticed that he was watching Beh . . . a little bit too much. Okay, a LOT too much. He watched my beautiful five-year-old as if there was no one else in the room. Granted, I know Beh is adorably handsome and has a charisma that wins people over, but . . .

The feeling I got was the same one I felt once before, when I was sixteen or seventeen and a friend's father, someone who apparently had high standing in the Mormon church, was giving me and another girl a ride home in his van. He reached all the way across from his seat to where I was in the passenger seat and moved his hand slowly along my lap. "I just needed to make sure you had your seatbelt on," he said. Yeah, right. The danger and fear I felt then were exactly what I felt when I saw this stranger look at my child. And if parenting my sons has taught me anything, it's to implicitly trust whatever my feelings are telling me.

The next week the man was there again, but without the child he had been taking to the group. He was there just to see my son . . . and to bring him an expensive gift.

After that I decided Beh was NEVER going back to that waiting room again.

Last week I had someone else take my older son to his group and try to scope out the stranger. That wasn't too fruitful; his only report was "the guy didn't seem so weird."

This week I made sure Beh was in safe hands at home when I took older brother to group. The stranger was there with his teen-aged charge . . . and he was kind of a jerk to the kid, telling him to read his book when he tried to join the waiting room conversation. I took myself outside, sat on a bench under the window where my son's session was taking place, and listened to the cacophony that was my son's social group.

I finally went back into the waiting room, and after a few minutes the stranger stood up and handed me a bag. "Will you give this to Beh?" I opened it--a plush toy and another book.

He said that he had the teen in his charge search through the entire bookstore to find that one book for Beh.

I cringed.

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I'm taking precautions and exploring avenues to investigate the stranger--yes, I'm going to ensure that my son is never again in his presence, but I still want to investigate who the person is because if he is someone who harms children I want other families who have children with autism to be aware so that they can protect their children, too. I'm not writing this blog because I'm seeking advice about how to handle the stranger; I'm writing it because this episode is indicative of a much larger issue that will always confront Beh.

As a male with a developmental disability, Beh has double the likelihood of being sexually abused. It's an ugly, horrific truth. There are people out there who would prey on his inability to speak and seek to take advantage of it. Sure, I can keep him away from the stranger in the waiting room, but what about the people I can't keep him away from? What about the older child at school, the aide on the bus, the counselor at the summer program? I have a hard time stomaching that I cannot always be there to protect my child.

And if anyone ever does hurt him when I'm not there to protect him, they better pray that they have people there to protect themselves.