Forgive me, this is a hard post to write and I’d like to do justice to both the joys and the sorrows in their turn. It is a post about discoveries and magical thinking–the good and the bad involved in both. This is about a book–and a boy who will probably never read it. I would separate them, but the two things are inextricably linked for me. It would be like dividing the sun from the moon.
Be warned, as it is written on ancient maps past the edge of the known world: Here be dragons!
I’ve been a fan of Jim C. Hines ever since I met him at a West Michigan Writer’s Conference a few years back. Just being near someone who had taken the words from the nebulous gray spaces of his brain matter and slapped them so eloquently on a page was a heady (pardon the pun) experience. I may have gushed and stammered all over the man, but he took it in stride.
I recently discovered something that makes me appreciate Mr. Hines even more–and makes me want to introduce his works to a whole new audience in the autism community–even as I know my son will likely never discover this joy for himself.
Prior to meeting the author, I had read a few of his Princess Series novels and enjoyed the witty repartee and fast-paced action, not to mention the kick-ass heroines who not only broke the mold of fairytale princesses they then stomped on the pieces and spit in the eye of tradition.
So, when I saw that there was an opportunity to actually take part in making a book come to life by contributing to a KickStarter, I was all over it. And, then, when I listened to the author read the book aloud week-by-week during the initial Covid-19 lockdown, I was over the moon because the author had included a character instantly dear to my heart: Mac–a boy who is non-verbal and autistic–just like my son.
I’ve reviewed the book in greater detail on my Goodreads page. You can read it, if you like. Here’s the link: Tamora Carter: Goblin Queen.
Being part of the start-up for the book, I got a copy of the printed novel when it was released. As much as I loved this story, it arrived at a time when I had come to a heart-breaking realization about my son. But let me backtrack to early this fall.
I made the decision to keep my son home from school this year due to Covid-19. Since September, I’ve done my best to teach him with the help of remote access to his teachers and a few LINKS–neurotypical students who volunteer to buddy-up with the special needs program students.
In the past, I struggled to work with my son. Full of enthusiasm, I would buy books and then plunk them down in front of him and hope he’d find a way to fall in love with learning the way I had. Instead, we had battles during which I bribed my son to sit still by handing him candy and reading to him. Or forcing him to approximate speech or scrawling handwriting by dangling something he wanted–like iPad time or calendars–contingent on trudging his way through writing assignments and other non-desired work. This was the pattern to our engagements–one of repeat hostile exchanges with rare moments of detente.
For years I did this. Until my son started destroying every single book he could get his hands on. Perhaps it was just his OCD desire to rip paper–or maybe he was telling me the only way he knew how that he did not want any more books. I told myself my son just didn’t like reading. That it was becoming an antagonistic and destructive thing between us and that I would leave it to the school to be his educators and I would stick with being his mom.
Skip forward to this fall. The kid is at home and I have made teaching my son the top priority during the week. I pull out books and white boards and dry erase markers. I buy science/reading/spelling books with worksheets at around the first or second grade level. I break out the flashcards. With Math, I have greater options–that’s one thing the kid can do.
With dedication and goals in mind, I started working with my son. Once again, I force him to try and jump through educational hoops set up by a system that focuses on written/language-based education. The only system I know. I tried to teach him. My son tried follow along. But things slowly became clear to me over weeks and weeks of effort on both our parts.
At sixteen, my son cannot read. Oh, he can find an island off the coast of Michigan no one’s ever heard of on Google maps and then type that name into a search engine in order to download a time table of the sunrise and sunset charts for the past century. But he cannot read a simple sentence.
It was the work where five very short sentences spelled out what I had refused to see. When I read the line out loud: “The bee is black and yellow.” I asked my son to point to the bee pictured on the page. It was the only image there–a flower with a giant bee floating above it. It wasn’t in color, but surely my son could point to a bee? We’d been reading about them in his science workbook just the previous week. I’ve pointed them out in our yard whenever I saw one.
My son randomly pointed to a blank section of the page. He was trying to comply, but I might as well have asked him to solve some advanced quantum physics equation or design a rocket ship built to run on guacamole.
The more I tried to find evidence that he was understanding any of the written work, the more convinced I became–not only can he not read, he cannot comprehend very much that is read to him. I read very short paragraphs with two simple questions to answer using multiple choice. He always picked answer A–almost before I finished asking the question. Sometimes even before I asked him anything. My son had learned to approximate understanding. He had become an excellent imitation of a student.
I was stunned. I’ve known for a long time that my son has some pretty severe limits that go along with being autistic. He can’t speak. He struggles to connect with anyone–even close family. He hates using his AAC device–though he can plug in “Bacon” pretty quickly when he wants to. But I honestly thought that, someday, if his teacher’s kept working with him, if I worked with him, if his brain caught up with the learning, that he would be able to read. Now, that seems highly unlikely.
I contacted my son’s teacher and babbled at him about this. I was seriously confused. I told him,
“I thought [my son] could read. But I’m not seeing any evidence that he understands anything in writing! I’m not even sure he understands anything I’m saying.”
I’m going to paraphrase what the teacher said in response, forgive me, it’s been several weeks and I may get this wrong.
“The hardest thing to gauge about what the kids in our classroom are learning is the difficulties they have in demonstrating that knowledge. Your son might be taking in more than we know. He may simply not be able to perform as expected when given a verbal instruction or asked a question.” His teacher said.
“I asked him to point to a bumble bee…and he pointed to nothing.” I said again. As if I had to prove that I was right about the most devastating fact that seemed obvious to me.
After he was diagnosed, I learned that my child would struggle to do what almost everyone else can with just a little effort. Putting on socks took forever. Learning to jump took so long I was beginning to think he had a physical impediment. But each task was conquered with time. So, I assumed the same would be true of reading.
I attended many conferences aimed at helping parents to understand their child better. To reach them at their level. To set expectations that were achievable but just a little challenging. In the words of one speaker: “We aim for what is possible for every child–even if they can’t reach every goal, we assume competence.” And that’s what I did.
For years, I had hoped he would start to talk. It took a decade before I admitted that wasn’t likely and we refocused his objectives around communicating with his AAC device. I always believed that someday he would be able to read and communicate with me–someday. And this fall, it finally occurred to me–someday may never come.
My son cannot read. May never read.
And to me–who loves books, and considers writing to be a passion driven form of expression–to realize that my son will likely never read anything I’ve written for him to remember me by. There are no words to express how painful this was and is. Giving up hope for my child is the hardest thing I have ever done–and by far, the most painful. But hanging onto unrealistic hopes and putting that expectation–that burden–on my child, is worse.
And it was during this horrible epiphany that Jim’s book arrived in the mail. I cried holding it. And then I tucked it away in a cupboard where I could see it everyday that I passed by. And I grieved.
A day passed. And then another. And then a week went by. And every day that book called to the quiet spaces of my heart: “Read to him. Just read to him.”
And so one night, I called to my son. “Honey, I want to read you a book. It has dragons and magic and a boy who talks with an iPad like you do.” And because he’d wanted to sleep in the living room for some reason, we dragged his mattress out there and that’s where I read to him every night just before bedtime.
In the world of fiction or made-for-tv movies, this would be the ah-hah moment where my son would leap up and prove he could read all along and everyone would hug and life would be perfect. That is not what happened. But what did happen was good in its own way.
I read a book to my son, the way I always imagined I would before I became a parent. And he stayed still long enough to hear a chapter at a time. We made it all the way through the book in about three weeks. It was pure magic. And I was sad when the book was done. Until I remembered–there are more books out there. And I went and found one.
We’ve been reading Roald Dahl’s James and the Giant Peach for a few days now. It doesn’t have dragons or goblins or a roller derby queen who eats kimchi and fights evil fairies–but the chapters are only a page or two long and that makes it a perfect read before bedtime. And if all my son gets out of this is the sound of my voice lulling him to sleep, if that’s how I am remembered, I am okay with that.