or imply that you are less important in any way. I'm just attempting to make this book easier to read.
There are going to be some parents who strongly disagree with some of the things I've written from the teacher's point of view. While most parents of kids with special needs have been treated fairly by the personnel at their school, frankly, there are some who haven't. Those parents tend to have an unfavorable view of teachers and school districts. I can't blame them. I also can't blame teachers who have been verbally or physically assaulted by parents, if they're a little skeptical of what I've written from the parent's viewpoint. That's okay. Everyone has had his or her own experiences, and I'm not doubting any of them.
What I've written here reflects the views and attitudes of the majority of parents and teachers I have dealt with. No matter what you hear in the school's parking lot or lunchroom, remember that unhappy people tend to talk the loudest, and happy people tend to stay quiet. The people you hear from are the ones with complaints. The opinions of people who are content often go unheard until you ask.
It took me several years to gather the information necessary to write this book—and a while longer to figure out how to present it so that it is useful. I hope I've succeeded, and I hope you find something here that makes your next parent-teacher conference go more smoothly.
My child and I have not had easy lives. Since the day my son was born, I've had to fight to keep him safe. Not only have I done all the things for him that parents of typically developing children do—fed him, clothed him, given him shelter, and taught him as he has grown—but I've also had to deal with the fact that he lives in a world where he does not fit in—a world that doesn't understand his needs.
I've always had to think ahead, assess new situations, and try to figure out everything that could go wrong before it happened. He has as much intelligence as other kids, but not their common sense, so it's been hard just keeping him alive.
His impulsivity has been a nightmare. When he was little, he ran. If my hand wasn't somewhere on his body to keep him with me, he was gone. Nothing I said made him slow down, much less come back. To get him to stop, I had to physically run and catch him, every time he got away. Any time we left the house, he had to be strapped into his car seat or stroller, or I had to hold onto him. Otherwise, he would run the instant my back was turned. I've fished him out of deep water, and I've chased him through shopping malls and parking lots as I prayed for his safety. I've snatched him away from unfriendly animals and pulled him down from high places. Locked doors and windows couldn't keep him in the house, once he learned to pull chairs over and stand on them to reach the locks. More than once I've had to chase him down the street.
Coping with his sensory difficulties has given me more than a few gray hairs. Things other children enjoyed drove him nuts. Balloons terrified him because they might pop. He would cry in pain at movie theaters because the sound was so loud. Eating mashed potatoes at Thanksgiving made him gag and vomit. The seams on his socks hurt him, and the neck openings on his shirts choked him. He could only wear pants with elastic waistbands, because other kinds of pants felt too tight, and they could only be blue, because “that's the color pants are supposed to be.” The smell of cigarettes made him sick, and he made sure the person smoking knew it. Cat fur felt really good to him, so he petted every cat he could get his hands on, whether the animal liked it or not. He also liked the hair of the little girl who lived next door, except she screamed when he pulled it—which made him laugh. Her mother didn't find it so funny.
I've had to run social interference since he was a baby. His grandparents asked why he acted the way he did—none of the other grandchildren behaved this way. The kids at the park wanted to know the same thing. Their mothers didn't care why he did what he did—they just didn't want him doing it near their children. When one of my son's classmates invited him to his birthday party (because his mother insisted), my boy really wanted to go. The entire time we were there, I stayed within an arm's length to make sure he didn't break something, or open the presents, or eat the cake before it was served, or insult someone, or take his pants off because they itched, or do something else I couldn't anticipate. The other mothers were very kind, but in some ways their compassion seemed to magnify the fact that my son was so far behind developmentally, which made me feel even worse. I was so relieved when we had to leave early.
I've spent years worrying about how my child will make it as an adult when I can no longer help him. Will he be able to work? Or live independently? Will he be able to keep himself safe from predators, bankruptcy, legal entanglements, and loneliness? Who will love him when I'm gone? I've searched for answers. What can we do now—what can we teach him so he can function independently one day? I've read books and attended conferences, searched out gurus, changed our diet, and had to learn more about psychotropic drugs than any parent should have to. I've taken him to neurologists, psychiatrists, psychologists, gastroenterologists, alternative-medicine doctors, karate class, and soccer, and done more hours at the homework table than I can count. We've made progress, but I'm still scared he won't learn everything he needs to know.
Since the day he was born, I've had to be constantly vigilant. It hasn't been easy, and I'm not done yet. We've got a lot of progress to make in just a few short years.
Now he's coming into your classroom, and you're asking me to hand that responsibility over to you.
After all we've been through, I'm expected to give him over to someone I don't know. I'm supposed to trust you to keep him safe and meet his needs, even though he may act like no other child you've ever had in your classroom, and even though you may not have had any training in autism. I'm meant to believe that you will somehow like him and care about him, even though he may be more work and cause you more grief than all the rest of your students put together.
That's asking a lot from me.
You'll be making many decisions that will affect his life now and maybe forever—decisions I have no control over. It will be up to you to decide how much you learn about autism and how you apply that knowledge. Your attitude and behavior will help decide whether his classmates are helpful and friendly or mean and rejecting. You'll choose how much time and attention you give him in the classroom and how nice you'll be. These choices are ones you'll make yourself, and there's not much I can do to influence them.
There are also choices we're supposed to make as a team. Big choices—like Individualized Education Program (IEP) types of things. What supports and modifications will he get? How much homework and class work will he do? Will he get speech services, social-skills training, or adapted physical education (PE) classes? How about occupational therapy or counseling? What are his goals and objectives? What are his biggest difficulties, and how can we help him overcome them?
Together, we're supposed to chart his path. That's what an IEP is all about—a team making a plan for how we're going to proceed. But sometimes, that's not the way it works. I sit down at the table and spend the next 2 hours looking at data you've accumulated and listening to the goals you've already decided. Then you hand me a pen and ask me to finalize the paperwork—my only contribution to our plan. Where was the part when you asked for my input? When did you ask me about my knowledge of my child, my goals and expectations, my ability to work with him at home, our struggles, and our progress? My concerns and fears—when did you ask for those?
Sometimes I have put my foot down. I've stopped the flow of the meeting to try to make sure you understand my perspective. Sometimes you listen and accept what I say,
