This is an essay about my son, Asperger’s and diagnoses relating to disability.

This essay is available in distraction-free PDF and an MP3 of me reading it. Click here or the button below.

“Mommy,” my eldest son said as we were driving, “I just read a book about a kid who has Autism and it sounded like me.”

“Oh really?” I asked, careful to keep my voice level and steady.  “Do you think you have Autism?”

“Maybe,” he replied before asking, “how can we find out?” I thought for a moment then replied,“You can get tested. Do you want to do that?” He nodded, “yes.”

image of a double rainbow looping over a town. the ocean is in the foreground. the sky is apears dark.

I have known for a very long time that Micah probably has Asperger’s.

In response to problems at school and behaviors that I observed, I sleuthed around online. He fit almost all of the “typical” pieces of a person with Asperger’s: social behavior and social interaction, love for rules and structure, intense subject absorption, hyperactivity (in an inability to sleep at night), and a near-savant level of intellect.

The only things really, in which he does not fall into a “perfect” mold for a child with Asperger’s is that he has a great sense of humor and makes excellent eye contact with me. That may be the simple result of having a deaf mom that absolutely needs eye contact and non-verbals to communicate, who knows?!

Disability Is a Natural Part of the Human Experience

In our house, disability is emphatically not a bad thing. It’s an aspect to our lives, a part of who we are. It’s the framework upon which we experience our world.

Having my son say that he thinks he might be on the Autism spectrum is an exciting chance for him to understand himself better, and for me to understand him better.

For me, understanding him makes it easier to access tools that can help him, connect him with resources, and see potential bends and twists in the path that he will navigating for his life. For him, it’s a chance to connect with a defined tribe. A chance to realize that he’s not so different after all and he’s not alone.

A diagnosis is not a sad thing. It can help turn on the “a-ha!” lightbulb

It’s like wondering why your child can’t read even though they are of an age that others do, and they are obviously intelligent. You wonder and try and figure it all out and it’s so  frustrating when the dots don’t add up to form a coherent picture. Then when you figure out your child has dyslexia ,  it all clicks and make sense – it’s like the proverbial light bulb goes off and your head kind of explodes, “oh so that’s why…!!

That’s what it feels like with our clicking in place of Asperger’s: “oh, so that’s why….!!

A diagnosis is simply a name, a label that is given to a particular group of symptoms, manifestations (whatever you want to call it) that a body is expressing.

It can – and should be – be a tool to help understand a person better.

It does not have to be some kind of earth-shattering thing; it can be as casual and easy as a conversation between a son and his mother while driving.


This post is Micah-approved!

two people facing the camera, smiling: one is a woman, and the other a young boy. they both have dark hair and are smiling

If you’d like to download this essay,  click here or the button below.

If you’d like to listen to me read this, just click on the podcast below and be sure to subscribe!

Harry Potter and the Prisoner of Azkaban:

Harry Potter and the Prisoner of Azkaban (free on Kindle Unlimited is reviewed in our third installment of book reviews in The Kid’s Corner, Micah’s little spot on this blog.

He’s whipping through those Harry Potter books super fast. His first review was the Sorcerer’s Stone , and the the second was the Chamber of Secrets (both captioned!, not #craptioned, cuz he’s a CODA and knows better)

Here he is (with a little help from Mack).


Adding captions is easy if you follow this NCDAE tutorial


Micah loves comments (hint, nudge) !

The other day, Micah was thinking about Mac and what would be going on when he would be three years old.

“Well, when Mac is three years old, he’ll be starting to talk, just like Moxie,” he said with a confident nod, his little voice full of assurance.

I stopped for a moment, wondering if I should just let that pass – because Mac, not having a disability (that we know of, anyway), will most likely start to talk long before he’s three years old. And yet addressing that he will likely be talking long before he’s three years old – but Moxie won’t – would necessitate talking about the reason he will but she won’t: Down syndrome.

Then I laughed a little at my hesitation. I mean, it’s not like we don’t talk about disability in our house! Besides the fact that I’m deaf, conversations like the one we had about having no arms or legs isn’t in the slightest out of the ordinary. I think it just feels different when I’m talking about Moxie, Micah’s little sister.

So I took a breath and turned to Micah, “you know, Mac will probably start to talk before he’s three years old,” I said. “In fact, he’ll probably be talking when he’s two years old, and maybe even when he’s one year old.” Micah nodded in that way he does when he wants to make it seem like he knows what I’m talking about…but he really doesn’t. I went on, “Moxie has Down syndrome, honey.” He nodded again, this time with excitement, and said, “yes, like my friend William!” I said, “yes, she has Down syndrome just like William has Down syndrome. That means that both she and William have an extra chromosome, an extra bit of information in their blood. That extra bit of information can change some things and talking can be one of those things.”

My friend William can talk,” Micah said. “Yeah, honey, he can talk and it doesn’t mean that just because he and Moxie both have Down syndrome that they are the same. He is William and she is Moxie. It’s like you and other boys that are 4 years old, right? You are a boy and they are boys and you are all 4 years old, but they might not like Star Trek or reading or playing pirates – you can have some things the same and some things different. It’s like that with William and Moxie. They have Down syndrome in common but he’s William and he’s a boy and she’s Moxie and she’s a girl and they are very different people.”

He nodded, but I could tell that I had lost him after I mentioned Star Trek and playing, and I was right because the next thing I knew, he was talking about a girl that he likes in pre-school and he likes her because she will play Star Trek with him. That’s my boy, all right.

I let it pass, let the conversation move in the fluid way that conversations do, all the while thinking that I’m glad we are talking about this, glad that Down syndrome and the differences that it brings won’t be something we’ll tuck into a pocket, unexplored. Rather, it’s something that we are already pulling out and having frank conversations about.

That’s my advice in this: to be upfront about disability, any disability, but especially about disability present in your own family. Rather than making a big deal about it, and waiting for some auspicious drum-rolling, book-toting moment, weave the talk about disability that is present in your lives into your typical conversations. But do talk about it. Kids are like ants with the largest antannae ever – they are everywhere and tuned in completely when you may not think they are. They can smell it when you are not being honest or you are putting them off, so don’t. Just tell the truth.

Bite-sized, fun-sized, kid-sized. Truth.

Some kid-sized truths to remember about Down syndrome:

  • Down syndrome is really pretty easy to understand: it’s just an extra chromosome
  • Down syndrome is different for everyone. Like all disability, it’s not one-size-fits-all
  • It does have the potential to change some things in the way that the person with Down syndrome will learn/grow
  • Remember! Down syndrome is nothing to feel sad about. If you feel it’s a tragedy, your child will pick up on that! Keep those little antennae in mind when you talk!

That’s all the advice I have for now and that’s as far as our own conversation has gone, so I’ll leave it here.

Tell me: any other kid-sized nuggets you would add?




It all started innocently enough. I was making some wretched low-fat no-taste concoction at the stove, my back to the kids. I was startled by the degree to which my cooking skills have nose dived since becoming pregnant, scared about what I was mixing would result in. Micah was calling me. Happy for diversion, I turned.

“Mommy! Why do we have necks?”

AH! A spark went off my in my soul. I love this kind of stuff. I happily turned off the stove, leaving the mess that would be dinner right where it was and went over to sit with Micah. Paused for a minute to spin my mental yarn, then went with it, full force.

– necks hold up our heads, give us space to swallow, allow us to reach – sort of like giraffes?!

When I finished, Micah’s chin was propped up by his hands, his big, chocolate-brown eyes seriously gazing at me. He nodded. Then he asked, “why do we have arms and legs?”

Huh. Why do we have arms and legs?

Of course, we have them for walking, reaching, grabbing, gripping – all the useful pieces of our life. I told him this, but I thought it was a good time to also talk about when you don’t have arms or legs.

Because you can still “walk”, reach, grab and grip without arms and legs, you know. It’s not all completely dependent on arms and legs and I want him growing up knowing that.

So I told him about my friend, Pauline. She doesn’t have arms or legs. She is one of the most capable people I know – living proof that you don’t need these appendages to make your life happen – that these limbs are simply very useful, but not totally necessary.

Micah was enthralled.

And then he wanted to know how she drove her wheelchair.

Remembering that Pauline has a series of videos, we went to YouTube and watched this:

Loving it, he wanted more. So we watched this:

And. Oh, how I love Pauline’s message. The consequence is starvation. Might be emotional,  might be spiritual, might be physical. And it’s so true.


Micah had his own question for her so we duly emailed her. I feel – and felt – so blessed that I’m in a position to introduce my children to friends of mine that are true mavericks. People that are forging a new way in life with a bold fearlessness that both humbles me and makes me proud.


An extra video, just for you – a snapshot of Pauline’s life

In my first year teaching, I had native speakers of English right along with kids who did not speak one lick of English – who were beside the kids who spoke a phrase or three. This was in Macau, which was a Portuguese colony at the time, across from Hong Kong (which was a British colony at the time), next door to China (which was still China at the time).

Some of the Mamas of the native English-speaking kids were nervous about how their kid was going to "do" – would they fare well, in this class of such mixed-English ability? With kids that wouldn't "push" them to greater levels of linguistic success? I distinctly recall my confusion with one mother in particular. "I so wish there were more kids in this class," she sighed rather dismally. "What do you mean?", I asked, "there are a lot of kids here!" "No, you know, ones he can talk with, ones he can bring home" she said. I was silent then, stymied. I couldn't quite wrap my brain around her prejudice, and being only 19 (or 20?) years old at the time, I didn't have the confidence I'd later gain in responding to hogwash.

While I may have (privately) thought that mothers like her were every level of awful, I did (also privately) wonder how much stimulation the native English speaking kids would get. And how on earth I was going to manage to teach kids in English who didn't speak any English – and sans aid, sans assistance, sans interns.  Just me and those 20+ little smiling dollops of potential.

So, I did what made sense to me: I teamed the kids up. I put the native English speakers with the kids who did not speak any English. I tried hard to even it out – that is, I'd put the book-loving native English speaker with the sporty-spice who couldn't speak English. This was because I wanted each person in the team to excel in something – to be the lead person in something. I wanted to avoid creating an environment in which the native-English speakers came off as better/smarter/faster/whatever merely because they knew the language whereby I was instructing. The kids who didn't speak English knew a lot too, and should be given the opportunity to share and teach, I thought.

A year passed. What I noticed was that some kids that started out speaking no English at all spoke very, very well. Some did not speak very, very well but but spoke well and did not struggle at all in class. The native speakers? Their own skills had shot off – evidently, the daily tutoring they were giving their peers re-enforced their learning, allowed learned concepts some ready application. The students had to figure out how to explain things; this does a lot, apparently, in letting the juices of learning slosh around in the jug.

It was win-win. Good for one, good for all.


Now I'm in the US (which is still part of the US). Macau has been returned to China, Hong Kong has as well. China is still China. And I've got a daughter with Down syndrome. I read here and there about inclusion and about how having a child with special needs might pull back the class; how could learning happen when one is developmentally delayed? How could the child with developmental disability actually help his/her peers in the learning process?

And it brought me right back to Macau. To worries of children not learning because their peers did not speak their same language. And it brought me back to the end of the first year, in which each and every child in that class spoke English, fluently. And in which each and every native speaker of English had risen even beyond the next grade level by virtue of their own peer interaction.

I see inclusion (and I'm not just talking about disability here) as the natural way in which we can all be smarter, we can all grow stronger. Inclusion is educational back-scratching. It might take time to see all the scratched backs, but they will be there.

One step behind the classroom is my boy, right there with my girl.

Beyond every kind of delight and pure thrill I get when I see them playing together, I see past the obvious big-brother-little-sister dynamic. The oh-that's-so-sweet-he's-helping-her piece.

He explains toys to her, he struggles with vocabulary. I step in, help him out. He explains the toy to her again, how to use it, what it does, how it neatly fits in with whatever-story-he's-obsessed-about-at-the-moment, only this time with the new word. His helping her teaches him, strengthens his own skills.
He explains it again. And again. Moxie takes the toy, bangs it. He takes it back and…well, tells her not to play with his stuff and there it goes.


But it's moment that I see played out throughout each and every day. Gain, gain. Just like in the ESL classroom. Just like in the inclusive classroom.

What has your experience with your kids playing together been like? And how does your little one go to an inclusive daycare/school/program? How is that?

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