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.
So, 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.
After Camden’s tutor quit in September, my husband and I paused. Cam’s behavior was not disruptive during his one hour a week of tutoring, but he was obviously frightened. He clung to me as soon as we got to the tutor’s house and begged for me to stay close to him. It was like preschool all over again. Even though preschool only lasted a few weeks, it had traumatized him. We still couldn’t drive by his old school or speak of it without Cam becoming physically ill. When a school bus drove down our street, Camden ran to me or toward the house. He never actually rode the bus, but it reminded him of the highly acclaimed early intervention school that had made him miserable and destroyed his academic confidence.
The conventional wisdom for situations like the one with Cam’s preschool or tutor dictates the employment of exposure therapy. The idea is you keep a child in a stressful situation and through incremental, gradual, or prolonged exposure they adapt. Or, as people like to say, “they get used to it.” There is a lot of research that suggests this method works for adults and older kids who have a specific fear, for example, of elevators or freeways. What is less clear is whether this strategy works for people with generalized anxiety disorder, which afflicts most kids with Asperger’s. Moreover, I have not found any data to suggest exposure therapy works for autistic kids who are legitimately overwhelmed by a hypersensitive sensory system, hyper arousal, as well as an equally overwhelming difficulty deciphering social cues and social demands (cf, Intense World Theory). Unfortunately, therapists and school professionals routinely recommend exposure therapy to families coping with school anxiety and school refusal. We now know, however, that many autistic kids who are left in chronically stressful situations, such as inappropriate educational environments, tend to become more shut down over time and, sadly, kids with Asperger’s in particular, frequently end up with PTSD.
I learned about the problem of toxic stress and trauma in older Aspies and adult autistics from reading accounts of other parents and from adult autistics in group forums and blogs on the internet. The blogs by adult autistics have been the most helpful (cf. Recommended). I have also gleaned a lot of knowledge from the Facebook group forum provided by Asperger Experts. Conventional wisdom, advice from parents of neurotypical kids, and therapists have been the least helpful. On the contrary, most of their ideas have been harmful. Keeping my son in school when he couldn’t handle it led to misery, nightmares, aggression, anger, irritability, sadness, and family dysfunction. And this isn’t just our story; you read it all the time on the above mentioned blogs and forums.
My family and I had experienced enough. As much as I didn’t know how to help my son be happy and less afraid of the world, I had learned not to trust the so-called experts outside of the autism community.
My husband and I decided that above all else we wanted Camden to be happy and to have a loving, trusting relationship with us. Reading the work of happy, well-adjusted autistics had taught me it was possible. If tutoring reminded Cam of school and made him nervous and unhappy, we weren’t going to do it. We had already experienced a rough summer. We tried medication to help with Cam’s generalized anxiety, and it was a disaster. Camden’s early childhood years had not been the carefree, easygoing years we had wanted for him. Sure, there were plenty of good times and wonderful memories, but coping with constant anxiety and sensory overwhelm had taken a toll on our son. So, after considerable thought, we decided to take a year off from everything that caused anxiety or discomfort for Cam. We dropped tutoring, homeschooling, and all therapies. We decided we just wanted Cam to be happy, and we would do whatever it took to achieve that.
So, what has our year off been like so far? Well, to be honest, when it began, it was pretty boring. Without therapy, tutoring, or school to break up the day, I sometimes felt a little crazy. I looked at my datebook, and it was empty. That can feel uncomfortable, –untethered. For most of the fall, Camden and I watched a lot of public television. Most of all, Cam wanted to feel safe. Many autistic kids get easily overwhelmed, overstimulated, and over-worried. So, at the beginning of our year off, we just rested at home. On many days, Cam did not want to go anywhere, –not even to his favorite, quiet outdoor places. So, determined to see Cam feel good, we stayed home. I think I’ve seen just about every episode of Curious George several times, now. But, boring is not all bad. In the quiet moments of boredom, one finds relaxation, recovery, and creativity.
While Camden and I watched television together, we cuddled and laughed, and I could see Cam felt safe. We connected over tv shows and chose favorite episodes and characters. Soon we were laughing at the same things and exchanging glances of mutual satisfaction. We created inside jokes. Over several months, Camden grew more relaxed and comfortable. For a child who is accustomed to being hyper vigilant and ready for the next sensory onslaught, this pure relaxation was healing. From September through Christmas, Cam slowly began to let down his guard. All the activity of Christmas derailed us for a few weeks, but after we settled back in our quiet routine, Cam relaxed again and eventually started getting really silly.
This silliness has been a great surprise and a great pleasure. Cam started imitating his favorite cartoon characters. He started making jokes and playing pranks on me and my husband. One of his favorite things to do is leave his Lego villains in strange places to surprise us. I jumped when I found an evil villain staring at me from inside our peanut jar!
Our schedule is never busy. We have a lot of down time, and I don’t force Cam out of the house when he doesn’t want to go. He gets easily overstimulated, so I go at his pace. But, we do have activities that fill our week. Camden regularly swims at a quiet, local pool with his grandmother. I go along and exercise or read and relax. We go for hikes in nearby forest preserves and parks. We are cooking a little more, and Cam has started helping with small chores around the house. We paint old furniture and try to make it look new. We play Minecraft, hide-and-seek, and go on “dinosaur hunts.” The dinosaur hunts are wonderful. Cam and his grandmother started them, and now we all do it. We look for dinosaurs and try to catch or shoot them, –typical five year old stuff. Sometimes the dinosaurs chase us and we run screaming and laughing down the trail.
Legoes and Legoland have become a central part of our life. We’ve spent many evenings in the basement building farms, ships, cars, and office towers out of Legoes. I think we have seen every movie and tv show related to Legoes that has ever been made! On uncrowded days, we visit Legoland. To be honest, I’m starting to hate Legoes! But, that is pretty typical mom stuff. If I step on one more pointy Lego block, I will lose my mind! 😉
As Cam relaxes and becomes more outside of himself, another positive thing has been happening: he is teaching himself addition, subtraction, and basic reading. This kind of self-instruction is not unusual for autistics, but it is still amazing to watch. Cam loves numbers, counting, and thinking about large quantities. He’ll often ask basic math questions or check his arithmetic with us. He frequently asks what a word is on Minecraft or television, so he can know it for himself. He has always had an unusually large vocabulary for his age, but now he actively tries to ensure he understands the precise meaning of words and concepts. Cam is particularly interested in concepts related to time. The relative notions of being “early” or “late” fascinate him as do the topics of extinction, death, and birth. Some of these concerns are anxiety driven, e.g., birth and death, but much of it is pure intellectual curiosity.
So, despite our intention to make this a year off from academics, Cam is still learning. The curriculum is entirely idiosyncratic, however. It is driven completely by his interests. There is no structure to it, and it is no longer connected to school.
Cam is still not social outside of his immediate circle, but he has become increasingly social and loving within that circle. He tells us he loves us all the time and won’t watch television without a cuddle partner. I think Cam will get more social over time, but I still worry. Social skills are the perennial challenge of autism and Asperger’s. But, Cam deserves to be happy first. Being social is a secondary concern, and it is a challenge that causes him a great deal of fear and confusion. Also, the most important social realm for any human being is their family. And this year off has deepened and cemented our family’s social bonds. When Cam is ready to try being social in the wider world, he will do so from a solid base. He will feel safe taking social risks because he will have the security of his family behind him.
The year off has been going well. I’m glad we’ve taken this time to ourselves and given Cam a chance to lead us toward what makes him feel whole. I want to be honest, though. The journey has been two steps forward and one step back. The first few months were difficult. Recovery from stress can takes weeks, months, or years depending on the person and what they went through. Cam did not want to leave the house for most of September, and we had to honor his wishes to get to where we are today. The excitement and schedule disruption of Christmas was a disaster. Cam acted out, suffered stressful meltdowns, and was agitated for two weeks until we settled back into our quieter routine. I am not saying, “Take a year off; your kid won’t be autistic, and your family problems will disappear.” Cam will always be the quirky, lovable, unpredictable autistic person that he is. And, that’s good; we love him that way. And, like any child, neurotypical or autistic, he still has good days and bad days. We still have challenges with co-morbid issues like the oft-mentioned anxiety. I fear we will not truly be able to solve the problem of anxiety until Camden can tolerate antidepressants. We haven’t figured everything out. All I can say is Cam is much happier, and we’re much happier. We are are exchanging smiles and snuggles and going to bed at night happy in our home. This is important. When I see where we were, and I read about kids who are struggling daily, I realize that our happiness means a great deal.
We had to set up the right environment for Camden. For us, that meant defying conventional wisdom and the experts, and taking a year off. For others, it may mean finding the right classroom, the right teacher, or the most appropriate school. It may mean homeschooling, unschooling, or online education. I believe whatever environment you choose, a good way to see if you’re on the right path is to check your child’s happiness level. I firmly believe that all kids need to be happy to be healthy. A child stuck in an environment making him or her miserable is a child whose mental health is deteriorating. We owe our kids a happy beginning, a healthy start.
What do you think? What has worked for your family? I welcome comments!
I was going to write about socialization this evening, but after the day my husband and I had with our son, I feel the need to talk about moods and triggers.
Jeff and I try really hard to figure out what our son’s triggers are and to work around them. Cam is only four years old, and our primary goal is to make sure he feels safe. For example, Cam cannot cope well with the sensory stimulation of grocery stores, so we don’t take him with us to grocery shop. I don’t believe in making him “get used to” his sensory challenges because, frankly, that hasn’t worked. If he could get accustomed to his sensory triggers, he wouldn’t have autism. He would just be a sensitive kid who needed extra time to adjust. The fact is Cam does have autism, so we do as many “workarounds” as we can to help him feel safe and happy.
That being said, there are days when we don’t understand what is going on with our son, and we can’t figure out how to help him. Some days, Cam is hyper, volatile, and destructive, and we can’t trace it back to a trigger. On those occasions, we know Cam can’t control his impulses and actions, so we rarely discipline him; we just wait it out.
Today, Cam was jumping on his trampoline and spitting for no reason (that I was aware of). I maintained my composure, made calm corrections, and let it go. But, then, he began jumping onto the sofa from the trampoline, nearly hitting the dog. After multiple warnings, I had to give Cam a time-out for five minutes in his room. When it comes to safety issues, I have to be firm. I pick my battles as much as I can. Sadly, on days like today, there is just one escalating battle after another.
I often go with Cam to time-outs to help him settle down. On other days, if he is on a roll, I use the five minutes to breathe and settle down myself. My husband and I remind ourselves repeatedly that Cam’s behavior is not personal and not about us, but we get frustrated and angry; we’re human. I know that autism brings gifts, but I can’t deny that it can also bring hyperactivity and aggression. At times, I feel like I’m waiting out a torrent of negative energy that won’t stop. Autism, at least at age four, is complex and challenging.
Luckily, most days aren’t like today. Cam’s bad moods usually do have a trigger. The more we understand those sensory or social triggers, and work around them, the happier he is. Even today, I would guess that Cam’s struggles were caused by poor sleep. We tried melatonin as a sleep aid, and it seems to have caused nightmares and turbulent sleep. At least, I think that’s what happened; I can’t know for sure.
My husband and I will keep looking for clues. It has been paying off. Cam is much happier, secure, and loving this year than last. We got his diagnosis in February and have had months to adjust our lifestyle. We have also gotten a great deal more patient. We find the more we let small behavioral infractions go and respond with patience and love to Cam’s aggression, the fewer issues we have. The more sensory triggers we avoid, the more social and sweet he becomes. Unfortunately, there are still very hard, “hold my head in my hands” kinds of days, but we are seeing less of them.
Cam 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.