Sh*t People Say, Homeschool Edition

Want to see an awkward moment? Tell someone you’re homeschooling. Usually the response is a polite smile and nod, sometimes with wide eyes or a raised eyebrow. When questions do come up, this is what they have been:

“Why?”

It was never something I wanted to do, but the gap between Cheeks’ abilities and the education he was getting at school had become too wide. I advocated within the system for years to correct that, knowing that he was surrounded by people who wanted to see him succeed. But there was no getting around the fact that the system measured his success by teaching him to behave and learn the way other students do. I don’t think that will ever happen. And even if it did, at best we were looking at a lot of time, effort and emotion to get there. The likely result would be him aging out of school before getting the chance to learn all that his peer group did.

“How has it been going?”

For me, it’s like having a newborn baby again. I’m isolated, overwhelmed, exhausted and confused. But I’m also discovering a whole new relationship, I’m giving him something only I can give him, and there are many moments of immense gratitude. Cheeks is happier than he has ever been, and focused on learning instead of compliance.

“How do you know what to teach?”

There are many curriculum packages available to the general public, and numerous web-based educational resources. But for now, I’m not using a curriculum guide. I want Cheeks to enjoy the process of learning again, so I’m temporarily allowing his curiosity to take the lead. All I have to do (for now) is offer a variety of topics and see what captures his interest. I have confidence that anything he learns during this adjustment period is more than he would have in school. I’m researching curriculum packages and plan to start using one at the end of summer.

I’m not under the illusion that it’s easy to acquire the skills of a trained educator, but I also don’t have to learn how to teach all kids – I only have to learn how to teach mine.

“Did something happen that made you take him out mid-year?”

Yes, but it wasn’t a one big thing. It was several small things.

First, I tried to show Cheeks’ IEP team what he can do when provided with the right academic tools. I brought them videos, books and news articles regarding his method of spelling to communicate. There was some interest in learning more, but not much. The district-based administrator on his team wouldn’t even take a copy of one of the articles I brought, much less read it.

I also offered a demonstration of how Cheeks spells; provided by Cheeks’ and his therapist, and done at our expense. I was flatly denied, and told that such demonstrations are considered training and therefore are not allowed. Privately, I offered his teacher to come see it unofficially and on our own time. That was months ago and the invitation has not yet been accepted.

The last straw came from a behavior therapist on the IEP team. I had often reminded the group to interact with Cheeks in an age appropriate manner, and presume his competence to understand. When we got to the part of our meeting where we would discuss how to reinforce his preferred behavior, one of the team members described a suggested example of what that might look like. She said in a sing-song voice, “Yay! You had quiet hands, buddy! Good job! High five!” Once again, I kindly reminded her that he is on the back half of 11 years old. Did she think maybe he knows her expectations of him are low when she speaks to him like that? She replied, “I talk to all the kids in his classroom that way.” The fact that I didn’t face palm right then and there is a testament to my self-control.

Regarding the middle of the school year, Cheeks’ educational programming is largely dependent on his IEP dates. Those occurred at least once annually, sometimes more often, but were not scheduled relative to a school year; rather, they were planned based on the elapsed time since the previous meeting. We had just finished his most recent IEP cycle when the decision was made. Being in the middle of the school year suggests that we take into consideration things such as grade-level curriculum, field trips, project-based learning, standardized testing, etc. When you have a student who is not included in these elements of a typical school year, then “mid year” becomes an arbitrary guideline to follow.

In short: it was because when you finally figure out what you’re supposed to do, you want that to start right away.

“Will he get socialization opportunities?”

This question presumes that Cheeks was getting socialization at school in the first place.

He was in a self-contained autism classroom with two other students, who were also nonspeaking. The playground where he spent his recess was the fenced-in one reserved for special education and kindergarten classes, not the one where the other fifth graders were. He had an assigned table in the cafeteria at lunchtime, which he shared with only his nonspeaking classmates and two adults. If there was an assembly, he sat in a chair at the back with his teacher, not on the floor with other students, in case he made noise or movements that could disrupt others. He usually sat alone on the bus to and from school, and no one has ever invited him to a birthday party or play date. He did have some times during a typical week when he was included along with other classes, but it wasn’t much and it was not social time. So I’m not too concerned about taking all that away.

At home, he’ll get facilitated activities, outings with other homeschoolers, or even just trips to the community pool. That’s already more than he got in school.

“I could never do that.” 

I think when people say this, it’s code for a mixture of respect for my choice and an underlying suspicion that I’ve lost my marbles. I used to think the same thing about homeschooling. I didn’t want to have to do this. I never aspired to it, or believed myself called to it. In fact, I fought it as hard as I could. But if, like me, you were also faced with no other good choices… you would figure it out, too. I’m glad you don’t have to.

That about covers what I have heard so far. If you’re thinking something and I’ve left it out, feel free to ask. I promise not to make it awkward.

 

Keeping It Real

Something that has always been very important to me as I walk this path of parenting a child with autism is that I want to be authentic about what we experience. That means being willing to sometimes tell the hard stories, because the hard stories are still our stories, and there is no shame in them. Shedding light on the experience without embarrassment is part of acceptance. If I am going to ask for acceptance from others, I have to require it of myself.

But Cheeks’ communication difficulties means that he can’t always tell me what’s OK with him to share. I always tell him what I’m writing about, because I know he understands me. But we can’t have long, thoughtful conversations about what it means to have an internet presence, or whether he feels comfortable with people knowing some of his behavior. I can only assume that an 11 year old boy would want his mom to edit herself carefully about what she writes on a blog like this. Being respectful of him is one of the highest values I hold.

Unfortunately those two priorities are sometimes in direct opposition to one another. I want to share our difficulties, of which there are many, but I also want to protect my son’s privacy. In those moments, protecting my son wins. Every time.

Because of that, as you read this blog, you may sometimes be left with the impression that living with autism is easier than it is; filled with victories and discoveries, and peppered with amusingly awkward social situations. It can often be those things.

It can also be indescribably stressful. One study done by the National Institutes of Health measured cortisol levels of autism mothers, and found it to be present in levels comparable to that of combat soldiers, holocaust survivors, and parents of kids diagnosed with cancer. (Cortisol is a hormone released in the brain during acutely stressful events.) At any given time, autism parents may be thinking about our child’s self-injurious behavior (estimated to occur in 50% of individuals with autism), elopement (~54% of people with autism), interaction with law enforcement, seizures (possibly as high as 38% of people with autism), inappropriate trust of strangers, lack of personal safety awareness, inability to verbally communicate a name or phone number if lost, bullying (3x more common against autistic kids than their neurotypical peers), and more. Don’t even get me started on the many ways we have to fight for our kids to simply be offered the same opportunities in schools and communities as their typical peers, and the judgmental stares and comments from strangers about what they observe in us.

Screen Shot 2017-06-03 at 3.09.00 PMI’m not complaining, because I love Cheeks more than anything, and autism is part of who he is. But I am explaining that what you see here is not the whole picture, and with good reason. When the day comes that Cheeks has a fluency level to communicate his own story, I will help him with that any way I can.

For now, think of us as an iceberg, and I’m only able to show you the part that sticks out above the water. I hope you understand why that is, and that you always know there is more to our story. For us, “keeping it real” doesn’t mean full disclosure, it means remaining true to our values.

Cheeks and I still welcome your questions about him, our family, or our experience with autism. Even if we choose not to be completely transparent in our answer, we’d rather you ask than wonder.