A Year Off, Unschooling

 

tractorAfter 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.

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Camden Hides his Lego Villains in Surprising Places

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! 😉

Camden Aiming at a T-Rex
Camden Aiming at a T-Rex

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.

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Cam stole my shower cap!

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!

Further Reading

Autistic Shutdown at Unstrange Mind

Intense World Theory, at WrongPlanet.com

My Anxiety is Not Disordered, at MusingsofanAspie.com

Why We Stopped Most Therapies, at RespectfullyConnected.com

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Supporting Neurodiversity in Autistic Kids


I was on a Facebook forum for parents of kids with Asperger’s the other day, and one post really struck me. A mom was celebrating the fact that her son went to a high school football rally. It took a while for her to convince him to go, she explained, but he went. Apparently, he went by himself and stayed for the whole rally. He reported back that it was pretty boring and that he didn’t have a good time, but that didn’t stop her from celebrating his “achievement” and proudly sharing it on our forum. I imagine she praised him for his good work as well. In the comments, a dad said that he and his wife made their son go to a dance. They dropped him off and refused to pick him up for two hours. The dad reported that he had told his son that he needed to be more social. The boy had a bad time, the dad commented; however, that was o.k., he explained, because it was a learning experience.

The more I thought about these situations, the more upset I became. I can only speak for myself, but going to a high school pep rally by oneself and being bored the whole time sounds horrible. What a miserable evening. Why was the mom celebrating it? I know. I get it; she was celebrating that her usually introverted son was getting out and being social. But, is that really a good idea? Doesn’t that send the message to her son that he should be more like the crowd, i.e., more like the neurotypical kids enjoying the rally? Likewise, forcing a child to attend a dance in the naive hope that it would make him more social says to the child that he should behave more like the other kids. It conveys the judgment that the child is wrong for being who he is.

I’ve seen similar posts about family parties and birthday parties. Aspie parents are often delighted when their kids attend these events. This is largely due to the fact that their kids tend to not want to go these functions (there are exceptions, of course; some autistic kids do want to attend parties). The parents are then thrilled when their child does participate, and they make a big deal of it. What I rarely see is parents celebrating that their kid made an awesome village in Minecraft. There is a bias toward praising kids for behaving more like neurotypical kids. I can’t imagine that this would be good for a child’s self-esteem. I would feel confused if I got back from a pep rally that I found boring and irritating only to find my mom praising me for enduring it. I would wonder: am I supposed to be like the people who enjoy these events? Why is that so special? Why does my mom prefer their more outgoing personalities over mine?

Autistic kids can be pretty stubborn when it comes to changing who they are, –as theIMG_0887y should be. It would be better to embrace their eccentricities rather than fight them. Parents are asking for a lifetime of conflict when they don’t. For example, at age five, Cam’s interests and preferences are already well defined. He is a dedicated nudist. He shuns footwear of all kinds. He hates babies, which he tells us regularly. He loves computers, tablets, phones, clocks, safes, and mechanical gadgets of all kinds. He doesn’t like dining out or going to the movies. He loves adults and sophisticated conversations, particularly conversations about paleontology. His preferences for recreation revolve around hiking, studying nature, and catching frogs. He is partial to sea creatures of the Cretaceous period, but is kind of “done” with dogs and other modern, domesticated pets. I don’t see him getting his hair cut ever again. When he is nervous, he likes to twirl his arms in large circles. And, if you really push him for a hug when he’s not ready, you might get a push instead. He likes his boundaries respected, thank you very much! Camden doesn’t just march to his own drummer; he is re-writing the music of the entire band, –which incidentally reminds me, his latest passion is swing music. This is not a kid who is likely to enjoy standing around applauding the football team. He has his own things to do. Perhaps the football team should cheer him on!

My husband and I celebrate Cam’s individuality; this is where he finds his bliss. We’re not interested in “fixing” him or curing him of anything. He is very socIMG_0881ial in his own way. We don’t care about him attending pep rallies or school dances. I could imagine him much happier in a lab or a music studio working alone or in a small group. And that would be great. We want him to be happy and proud of himself the way he is. I think this is the direction we need to move in as a community. We need to respect our kids for who they are and celebrate their achievements in the realms they have chosen as important. If we don’t embrace our kids for who they are, how can we expect the world to embrace them?

Some Success: Homeschooling and Socializing

attachment_1417753768018_photo~2We have been settling into homeschooling. Cam seems to have recovered from his preschool experience. He still won’t let us drive by his old school, but he stopped asking if we were going to make him go back. He has been much happier. His anxiety and aggression have decreased. He is more relaxed and sleeping better. He has become increasingly loving and affectionate; Cam now tells us he loves us several times a day. He gives us hugs and “pat-pats” on our back. Our family feels good again, and my husband and I feel good about our decision to keep Cam home.Still, homeschooling was not my first choice. Heck, it wasn’t even my second choice. My first thought was Cam would go to public school with accommodations. Then, I thought, well maybe a small private school would be better. Homeschooling was not what I wanted. But, I like seeing Cam happy, growing, and learning. I like hearing Cam and his daddy giggle while they play Nerf guns and wrestle like they are doing now in the basement. I like being able to sleep again. And, it is not as isolating as I thought it would be.

IMG_0233We keep busy. At this point, I haven’t been teaching Cam at home. He sees a tutor twice a week, and I do enrichment and play academic games with him. He goes to occupational therapy once a week. He hangs out with his Grandma for two afternoons. We go to the library, shopping if he is up to it (sometimes it is just too stimulating). We do a play-date with Cam’s tutor’s son, V, who is also four. While Cam plays with V, his tutor steps in now and then to coach him on social skills like sharing, taking turns, or initiating a game. Cam also meets with his cousin once or twice a week to play, as well.

Interestingly, Cam is probably more social now than he was in school. At school, he stood by himself at recess. In the classroom, he was pretty shut down. With his cousin and friend, V, Cam is engaged and playing. And, at home, he is more social than ever. Once Cam’s anxiety subsided, he became softer and sweeter. He is more open with everyone. He told the cashier at Costco today that he loved her. It was hilarious! Then after we got home, he asked if he could marry her and have her move in with us!

I personally think that socializing at home with your family is the most important socializing. I read about Aspie kids who are so stressed out at school, they can barely engage with their family when they get home. And, then the parents say that the reason their child is in school is so he or she can learn social skills. But, nobody can learn and connect if they are stressed, anxious, and overwhelmed. That being said, I know a lot of kids with autism do function well in school. So, I don’t want to be one of those people who says everyone must homeschool. You have to find what works for your child. And, I hope that one day Cam may be able to go back to school. There is a small Montessori school near us that might be a good fit. For now, though, we are happy that he is happy.

~Lou

Mistakes I Didn’t Know I was Making

I think all parents probably do this. After we got Cam’s diagnosis, and I started to learn about autism, I realized I had done things that hurt Cam without intending to. Here are some examples.

1) The Move  -When Cam was two years old, we moved. Cam was a wreck. It took him two months to calm down. The change was overwhelming.

penny2) Dog #3  -A few months after we moved, I thought a puppy might cheer up the whole family. The two dogs we already had didn’t agree. Chaos ensued. Cam loved the puppy but hated the noise.

3) McDonald’s Playland  -What a fun place to bring your child! Oops. This one took me a long time to figure out. Cam loved Playland, but only when it was empty or just a couple other kids were playing. He asked to go all the time, but half the time (i.e. when it was crowded) he had meltdowns. After the autism diagnosis, I got it.

4) Therapists #1 and #2  -Our first therapist had more bad ideas than good. The second was better, but still not great. Neither one realized Cam was autistic.

5) Target  -I love Target. I can get everything I need for the house and some new pajamas, too! Cam hates the place. After the diagnosis, I understood; it was the crowds, the noise, the lights, the over-stimulation. Strangely, though, he doesn’t seem to mind Walmart.

6) Brunch  -Any Saturday morning I could, I would wrangle up my husband and son and drag them to the pancake house. I was determined to make it a family tradition. Never mind the clanking dishes, crowded tables, and crying babies, we were going to have a nice time. Except we didn’t. Finally, my husband laid down the law: no more breakfast restaurants. Now Cam and Daddy make waffles at home.

7) The Holidays -I probably don’t need to explain this one, –the crowds, the tension, the loud gatherings–. Now, we keep it low key.

There are a lot more things I could list, but I don’t want to beat myself up too badly. Preschool, as you know if you’ve read the other posts, was a complete and utter disaster. But, as moms and dads we do the best we can. Autism is baffling, especially before you know your child has it. Even after you learn the diagnosis, it is mysterious. All we can do is keep learning and trying.

~Lou

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

School is Not a Quiet Place

Camden hated school. It wasn’t just stressful for him, it was traumatizing.

Still, strangely, he went without a struggle, without tears. At first, I didn’t know what to make of it. The teachers loved him. He was in a preschool for kids with special needs, and he didn’t seem to present any special needs. He sat quietly. He obeyed all the rules. He didn’t speak unless spoken to. At recess, he silently ran around by himself or stood quietly near the teacher. Surely, he presented a nice break for the educators who seemed overstretched and weary with all of the other kids.

puzzleBut, Cam did have needs. And, those needs were not being addressed. How did we find out? Well, that will take some unpacking to describe.

Camden was only in school a short time last year. He began in April and finished in June. He would ask me not to make him go, and that was it. He frequently told me he hated school, but once he got in the car, he became quiet. I now realize that his silence was a cue to the beginning of the shutdown process.

Cam always walked quietly into school. He never fussed, but he ignored the other kids, and drew back from them if they came too close. His behavior was easy and agreeable, but disconcerting. Despite all the assurances from Cam’s teachers that he was doing great, I finally went into observe him during the last week of school (Cam’s seventh week in the program).

On the day of observation, Cam did not seem to recognize me. I came right up to him to say hello, and he just looked at me blankly and went back to looking down. I was shocked, and said “hey, sweetie.” After some blinks, he seemed to wake up. A big smile and look of utter relief formed on his face. I, on the other hand, held back tears.

The following August, school started again. Cam told me all summer that he didn’t want to return. Family and friends countered that Cam had to be in school, that “it was the best thing for him.” Family and friends always say this; it’s common on parenting forums, too. The idea of life without school for a child is unacceptable in our culture. I’m not sure why, but it is. I always loved school and stuck around for two master’s degrees, but it never struck me as necessary. Alternatives always seemed equally plausible and acceptable. Historically speaking, large public schools are a relatively late invention. Before that, accomplished, well adjusted people also studied our world independently, in small groups, through tutors, or with their parents. Schools existed, but a variety of methods thrived in parallel. But, I digress.

Back Cam went to school. Again, he entered the sterile and bright halls, quietly and without a fuss. He looked down and dutifully switched hands for the hand-off to his teacher. I was beaming. “Cam would be fine. I worry too much. That strange moment last spring wasn’t real,” I told myself. “Surely, Cam would do great.”

But this time it was different. After school, the first day, Cam was a wreck. He ran around the house, hit the dogs, charged into me and his Dad, jumped on us, and talked non-stop. He swore at every little annoyance. He grimaced at corrections and could barely take in anything we were saying. His echolalia seemed to double overnight. He compulsively climbed the counters and furniture. He would climb up on his playhouse, swing-set, or fort, anywhere with some height, and jump down as hard as he could. He wanted impact, –impact against the ground, against the dogs, against us, against everything. And, that was just the beginning.

Every day after school, Cam’s aggressive behavior escalated. He threw toys, food, pots, and pans. He hit me, his Dad, and the dogs. But, what broke our hearts, what made us cringe, was when Cam started to hit himself. For me, that was a turning point. I had never seen that before. I had probably decided at that moment to home-school, but I wasn’t ready to admit it. It was only the first week of school. Surely, things would calm down.

But, they didn’t. At night, Cam had nightmares, usually one or two a night. His sleeping patterns were tormented. He would awake several times a night and call for me. His moods were volatile and angry. The second week I kept him home several days just to catch up on sleep and to break the pattern of increasing aggression and irritability.

In the second week, we also reached out to the school with increased alarm. They reported back that Cam was a perfect student. They didn’t think he had autism, and they even recommended he start taking the bus and entering the school by himself. They expressed concern that I was babying him too much.

I was livid.

Clearly, there was a disconnect. I contained my anger and sent several emails pleading with the teachers and principal to help reduce Cam’s anxiety levels and to implement autism protocols to reduce sensory overload. We met with the principal, the school psychologist, and finally had a big group IEP meeting.

The consensus was unanimous among the educators: Camden didn’t have autism; He needed to be challenged more (i.e. we were coddling him), and any problems we were having at home were simply parenting issues that we needed to address. This was my favorite part (insert sarcastic tone): the teachers suggested we add more “structure, discipline, and consequences” and, of course, a sticker chart! I couldn’t believe it. We had just come off a summer where Cam was happy. His behavior had been steadily calming and improving with each week. Clearly, school was the issue. And, regardless, how could I exert more “discipline” on a child who was already hitting himself? How would a sticker chart help with the nightmares and insomnia? My son was not just a little anxious; he was in full melt-down, toxic stress mode. Stickers and discipline were not the solution.

HeadphonesThe school, for its part, said they would make Cam’s headphones more readily available (they used to make him ask for them). And, they would add a visual schedule. But, because they didn’t believe Cam had autism, they refused to consult with the district autism specialist or implement autism protocols to reduce sensory overload.

My husband and I walked out of the IEP meeting silently. Like Cam, we lowered our heads and quietly stared at the floor as we slinked out of the building. We were devastated. Our school district was supposed to be one of the best in the state. We had moved to our town for the school district. Still, once we got to the safety of our car, we realized we had a big decision to make. We could listen to the experts and stay with the status quo, hire an advocate and fight for a better IEP, or leave the school altogether.

I hit the autism forums with a vengeance. I asked for advice and support from everyone. All the autism parents agreed that the school was wrong and probably acting illegally for refusing to address Cam’s medically documented autism diagnosis. We got a ton of support, information, and legal advice. The autism forums are amazing. If you have a problem with the schools, reach out to the autism community; they will help you.

In the end we decided to take Cam out of school. The teachers didn’t understand Camden. Not even the best IEP in the world can make a teacher understand a complex kid like Cam or care about their success. And, maybe it wasn’t the teachers or the IEP, after all. Maybe it was school. Maybe it was the structure of school. Perhaps, it was too noisy, too crowded, too chaotic, too bright, and just too much for our little guy. Some kids with autism are not going to fit into that environment, EVER. Period. Case closed. Camden is probably one of those kids.

So, after just three weeks of school this past fall, three weeks of trauma, we took Cam out. It took him a few weeks to recover and for the nightmares to stop, but now he is happy. Once in a while, he will still ask if we intend to make him go back, and we reassure him that we’re not. He is now in private tutoring, occupational therapy, and other quiet activities. And, he is happy again.

But, you ask, what about socialization? “Socialization is so important at this age!” “He NEEDS to play with other kids.” I can see the comments already. . .

Well, that is the subject of another post . . .Hang on tight; this ride is just beginning!

~Lou