Conversations in My Head about School

FullSizeRender
Collecting Rocks

I have begun thinking about next year. Cam will not be going back to school. We get that now. He still has difficulty processing relatively quiet days. So, the overstimulation and social demands of school, coupled with his high anxiety, would mean disaster. Please don’t tell me to “just try it.” Please don’t say, “all kids have to go to school.” Don’t say, I’m “isolating” him. Don’t tell me how hard it is going to be “on me.” My husband and I thought of all of this. For long stretches, it seemed like all we thought about. When people offer this kind of advice, I want to reply: “Use your imagination. Of course, we had these thoughts. We considered the obvious drawbacks. This was not our first choice.” This is not something we decided lightly, on a whim, as if it was on the menu at the pancake house.

The stakes are high. Cam’s mental health is at stake. And, we wouldn’t be so far outside the box, so very outside that we miss the box, if we hadn’t thought everything through. Cam has autism, not a cold. We believe asking him to tough it out in school is beyond his capabilities right now. Yes, I know some kids with autism do o.k. in school. Of course, I know that. But, a lot don’t. A lot are hurt, psychologically damaged, and broken. Trust me when I say Cam is at risk for that kind of outcome. Don’t ask me to pretend that isn’t the case, so everything can seem fine. It isn’t fine.

So, what do we do? People sometimes look at me as if I don’t know what I’m doing when it comes to raising Cam. I want to yell, “Bingo! I don’t know.” That’s just the problem. I don’t really know.

Yet, I do have some information. I have studied this stuff. I am past the period of reading several hours of research a night, but I’m still current on all the recent thinking. And, of course, I know Camden.

I know when Camden is happy, and I know when he is not. And, by unhappy, I don’t mean simply crying or whining or expressing displeasure. I mean very bad things: hurting himself, hurting us, hitting the dogs, throwing furniture, tearing up his room, kicking the door, banging his head, screaming, and cursing like a sailor. When a child hurts like that, you re-evaluate everything. Everything is on the table. Conventional expectations lose their importance. Happiness is not simply a pleasure; it is a marker of mental well-being. Learning to read seems trivial. I know that sounds strange, but it truly is. Keeping Cam safe, safe from the disorder in his head, from an inability to process a world that is often experienced as threatening, chaotic, and nonsensical, is all that matters. Learning about Pilgrims, finger-painting, duck-duck-goose, making maps and pie charts, all comes second. I wish I could explain that in a compelling way to concerned family members and disapproving teachers and therapists.

IMG_1736So, the plan is to keep Cam home next year. We will give tutoring a try again. If we could add one hour of tutoring a week each year, Cam will gradually gain a solid academic base. Our main goal will continue to be happiness and stability for Cam. As he grows more comfortable in the world, more trusting of people, and more confident in his ability to be present in groups, we will add to his education. And, at that point, we will re-consider school.

Behavior is Communication

on bridgeCam is happy again. He is back in his little bubble. Out of the quiet, I hear him laughing and jumping around. For a mom, a child’s joy brings the deepest happiness. When her child is in pain, a mother feels no deeper despair. This is a story about how Cam found his way back to joy and brought his family with him.

Last fall, when Cam was three, our family went through a stressful period. Our basement flooded. We had to clean out the damaged walls and floor, then cope with contractors on and off for several months. It was a busy, noisy, and difficult time. Our dogs barked from morning ’til night. To get out of the house and make new friends, I signed Cam up for three classes: art, tumbling, and Spanish. I thought the classes would be a fun break away from our messy construction zone of a house.

Cam hated the classes. In tumbling, he kept running out of the gym and into the hall. I had to chase him before he ran out into the parking lot. While the other kids milled around, laughing and talking, Cam avoided them and clung to me. Art wasn’t much better. As soon as we sat down, Cam begged to leave. He couldn’t focus on the crafts and pulled me toward the door. Spanish was a non-starter. After one session of heavy immersion, Cam walked out exhausted and demoralized.

At home, Cam hated the noise from the workers. He became increasingly hyper and aggressive. His moods were volatile and angry. He began repeating things we said (something I had never noticed before), but he couldn’t seem to focus or respond. Although Cam never really had temper tantrums, he had meltdowns that were so dramatic they broke our hearts.

My husband and I had no idea what was happening. Cam had always been a challenging and excitable child, but this was beyond anything we had seen before. We had never thought Cam’s hyperactivity was a big issue. He was three, and we knew a lot of toddlers who were hyper. Furthermore, Cam was so smart, we thought he was developmentally on track. His observations and questions about geography, plumbing, and architecture blew us away¬† His memory was detailed and accurate. Sure, there were eccentricities. And, Cam was extremely shy, but nothing seemed “wrong” to us.

Still, given Cam’s recent behavioral concerns, we thought he might have ADHD. We consulted a therapist. The therapist dismissed the diagnosis of ADHD and suggested we implement stricter discipline with more time-outs. She was certain we had been too lax. If Cam wouldn’t stay in time-outs, the therapist explained, we should hold him down in a bear hug, wrap our arms around him, and keep him locked against us. A little surprised by this advice, but not having answers of our own, we tried the therapist’s method for a few days. Cam’s behavior worsened.

We quickly saw the absurdity in the therapist’s approach and left her practice. Yet, I had to wonder: is this how psychologists and social workers are trained to deliver therapy for children? Is this normal? Our therapist seemed nice, but her emphasis on “consequences” appeared superficial and cruel to me. I wasn’t a professional, but I could see my son was in pain. “Shouldn’t we try to figure out why he is so unhappy?” I thought. Cam was waking up several times a night, and his nightmares were increasing. Our family was in crisis. Holding our son in a restraint hug was not helping anyone, most of all, Cam.

Not knowing what to do, and going on a hunch, I decided to remove as much stress from our lives as possible. I canceled Cam’s classes. My husband told the contractors to skip the finishing touches and end their work. I stopped taking Cam to the grocery store, Target, or anywhere else he tended to act out. We stayed home as much as he wanted. Contrary to the therapist’s suggestion, I grew more lax. I let Cam watch t.v. for several hours at a time. While he watched t.v., I held him or sat next to him. My only goal was that he become calm and happy. We hung around the house, and Cam helped me clean. We went for long, peaceful car rides. We visited his grandmother, –anything he suggested. We talked as much as he wanted or as little as he wanted. I responded to any aggression with patience. I had always co-slept with him a few times a week, but I began doing it every night.

Within two weeks, we saw a change. Cam’s nightmares grew less frequent and less severe. He began to sleep through the night. He became calmer and experienced fewer meltdowns. His aggression became almost non-existent. Cam was in a little bubble of calm, quiet and love. He was happy again. We were happy again. It felt good to feel safe as a family.

We lived like this for a couple months. After a while, though, we began to worry that we were overprotecting Cam. We were happy that he had stabilized, but we needed to learn how to get Cam back in the world.

We consulted another therapist. This time Cam was diagnosed with generalized anxiety disorder and possible ADHD. For a three year old, those are big diagnoses. I was stunned. Clearly our little guy had been carrying a heavy burden mentally and emotionally. His behavior had been a sign of overwhelming fear and stress. He didn’t need more time-outs or more discipline; he needed more quiet, more nurturing, and most of all, he needed to feel safe.

We continued providing that safe environment for Cam. Meanwhile, our second therapist helped us reduce Cam’s anxiety while slowly moving him back into activities outside of his bubble. Somehow, however, we knew something more was going on. Cam was happier, but his behavior was telling us to dig deeper. It was then that we took Cam to a pediatric neurologist. In February of last year, we learned that Cam had autism. Finally, everything began to make sense.

Through this experience, my husband and I learned that behavior is communication. Cam taught us that behavior is communication. It took us a little while to understand what Cam’s behavior was saying, but eventually we understood. Now, whenever Cam is getting overstressed, we let him go back to his bubble. We don’t force the world on him when he can’t handle it. We wait until he is strong and ready.

Autism is a brand new world for us, and as we make our way into it, we will be listening to Cam’s directions and watching for his signals. He’s the leader on this path, and we are so happy to be his companions.

~Lou