A Boy, A Book, and the Gulf Between Them

Family, From My Brain to Yours, Heartbreak, Isolation Recreation, Reading-The-Eighth-Deadly-Sin, Welcome To Autismland: Population YOU!, , , ,

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.

-*-*-*-*-*-*-

Striking the Impossible Pose with Jim C. Hines! Circa 2014

28 thoughts on “A Boy, A Book, and the Gulf Between Them”

      1. Hmm, I triggered the notification for your posts. When I saw one from you, I scrolled down to register a like where I saw your photo with the writer. There, I posted a comment about it before yet reading the post. Frankly, when I read the whole post, I didn’t know how to act… I had mixed feelings that I don’t know how to express… I felt sad for what I read…. I felt embarrassed for what I wrote… I felt proud to know someone like you… ❤

        Like

      2. Oh no worries. I have no illusions that everyone wants to wade through the many many words I tend to write. I know that most readers skim or just read the header and want to express something to show they are there. I haven’t always remarked correctly to posts I’ve read. Or I’ve been stuck on one minor point and ignored the main theme out of fixation of something that occurs to me. You’re here. You show up. You say nice things. That makes you one of the good guys of the internet. Now, if I ever manage to write something that absolutely knocks your socks off–just let me know!

        All the best during whatever seasonal holiday is approaching on your side of the internet/world. Next week, we Americans plan to stuff ourselves to the gills with fatty foods and fall into a coma-like sleep in front of the tv!

        Liked by 1 person

      3. “if I ever manage to write something that absolutely knocks your socks off-just let me know”. You do usually! That’s why I’m writing comment(s); I rarely post a comment outside my blog… I like you, your personality, and your way of writing. Sometimes, your language is difficult to me – considering English is not my native language; but I learn a lot from your words & writing style and enjoy it…

        Now for the holidays, we pray that humanity will enjoy all holidays again very soon 🙂
        Happy Thanks giving and happy new year for you and all your beloved ones.

        Liked by 1 person

  2. This is so lovely and yeah, it’s sad. I’ve been teaching art to a couple of kids, the little girl has some big learning disabilities, nothing like your son, but there is in me this irrefutable and illogical belief that if she WANTED to she could. As time has passed, I see that’s not the case at all. I look at her little bendy fingers and I see “No.” I watch her unable to focus long on objective reality to recreate an image and I see, “No.” Worst of all, I see her feeling stupid in the company of her absolutely brilliant little brother who puts her down. And I want to tell her parents to, please, for the love of god, send her to school, not this year, maybe, but next year, but they won’t. I have detached because I don’t run the world and I love her and her family.

    I think every mom and maybe every teacher wants the whole world for their kids or the kids they are caring for, whose education is their aspiration. I think it’s really difficult to step back and say, “This thing I want so badly for this person isn’t for this person. This person is going to have something different and I may never understand it.” All the and the yearning to keep them safe and not let them suffer the shit that comes with adulthood.

    And this is what you’ve written about with so much love and beauty. I wish I could hug you. ❤

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    1. Hugs upon demand! Any time, any where. Just as soon as Covid takes a hike!

      And, again, thanks. You know, I thought for the longest time art wasn’t going to ever be a thing for my son. But he’s managed to follow visual directives to create some pretty unique clay sculptures in school. I lack the acumen or talent to help him beyond providing paints and paper–but he does love taking pictures of the world–how he sees it. No one else would likely take 40,000 shots of a stairwell or an elevator door. But, that’s my kid!

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      2. That may be a blog post someday. Unfortunately, after my recent computer death, I am hoping the guy who recovered the brain can find the pictures. I went to find the one I used here with Jim C. Hines and discovered all my pictures for the past 15 years are missing. That was quite a blow. But, the guy thinks he can download them again. I just have no idea what happened to them when I transferred them to the new device. I will definitely upload them to Google docs as another blogger suggested. Just as soon as they are found!

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    1. With the advantages of having really good people to support and console you when things don’t go exactly as planned. Thanks for sharing. There may be other moms like me, who need to face similar truths. I’d like them to know they are not alone.

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      1. I reblogged it, too. ❤ Today I went down the alley to give some stuff to the kids and their mom. The little girl had made me a book of drawings, construction paper stapled together. I taught her that and it was incredibly difficult for her. Her drawings are abysmal because her hands don't work right and neither do her eyes, but SHE NEVER GIVES UP. My friend Lois — the one I shared your post with — says the bravest kids are the ones who weren't "made right" so to speak. ❤ I, personally, think their moms are brave. Goodnight.

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  4. I am so sorry for your disappointment, but so incandescently happy for your triumph. So often, we have to set goals that our children resist, sometimes it’s hard to recognize when we’ve set goals they don’t need to meet. Every one of those we can detect and eliminate is that much less unnecessary conflict we can cut out of our relationship. HUGS!

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    1. Thank you. I’m getting a lot of positivity from my blogging friends. I have to wonder how I found the best people out there to find! Surprising, seeing as I tend to walk through this world oblivious to the happy, shiny people around me. Thank you for crossing over my prickly barrier to say ‘Hi!” and make friends!

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      1. I would never have tagged you as prickly. You always strike me as particularly lovable. Maybe you remind me of my late bestie, Jane. Most people thought SHE was prickly, but she was a mushy lump of kindness surrounded by a thin prickly shell.

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      2. Aww, I’m sorry, it sounds like Jane was worth getting past the prickles. I can be. Maybe everyone has a certain layer of defenses you have to pass in order to join in friendship. But, I’m just grateful people are willing to try. For some, we higher maintenance prickly types are just too much work. Like an artichoke–they are delicious, but not before you get rid of all the pointy parts.

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  5. I posted this on Facebook and here I’ve copied some comments from a special ed teacher friend of mine who also has a developmentally disabled son. Pure coincidence. She’d chosen her field long before her son was born. Her son isn’t autistic, but had to learn to speak (he is pretty understandable), can’t really read, can write and read a few words, is the god of Uno and Skip-bo. Sometimes I’ll be there reading a book and he’ll ask me about it. The day I realized he was excluded from that world — my world — it about broke my heart. ❤

    “'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. In an educational system that demands "evidence" of student learning, this is by far the hardest truth for both teachers and parents to accept.

    Many years ago, my mother and I went to a weekend conference for parents of special needs children. It was really eye-opening. The best session was about grieving for the normal child you didn't get. Every expectant parent envisions holding their little cherub for the first time. They have visions of their baby's first steps, riding a bike for the first time, reading bedtime stories and baking cookies. Parents of a non-normal kid have to let go of those dreams and expectations if they want to love the child they have."

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    1. Love the child you have. That could be our anthem. Should be. Maybe I’ll write that next! (My kid is currently giggling and trying to lure me upstairs so we can do the bedtime rituals. Time to give meds, read the story chapter, and get Mr. Giggles down….

      And to find out what just crashed to the floor. Bye.

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      2. …a footnote: it is entirely possible one should not leave spray cans of frosting available for just anybody to get ahold of. Or, maybe buy them at all.

        No harm done, except to his blood sugar. Goodnight.

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  6. Oh…my heart goes out to you. As parents, we do have so many hopes and dreams for our kids. It is agonizingly difficult to let go of any of them and we keep on trying. But, as you so eloquently illustrate, sometimes it’s a gift to give a child that acceptance when all hope evaporates. No matter our disappointment. I love how you began reading to him nightly – creating a positive time together.

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    1. Thank you. For reading. For understanding. For sharing your positivity. I’m trying to develop that. It’s a new thing at my age, but to see this as a good thing. Now that I know, I can stop doing things that aren’t helping and maybe focus on some that might. Thank you for joining me.

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      1. It’s hard at any age, but more so the older we get. No matter what the challenge. And parenting doesn’t ever really end – we just have to try to adapt as they grow and change. That’s what I’ve found. And my challenges don’t rise to what you are facing. One way or the other, you/we are not alone.

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    1. I considered that too, whether I was making a lazy connection to call it ironic. But sometimes, there just isn’t a word invented that suits entirely and you’re just stuck with the 10,000 or so words you know.

      I’m glad you got to read it. I think of it as reaching out and touching friends when I write. It’s nice to hear from everyone while lock-down keeps me tied to home.

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