Conversations in My Head about School

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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.

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

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