Things on Thursday: A Conversation

My expected Things on Thursday post has been pre-empted by a particularly important conversation I had with my son this morning as we walked to the bus stop.

Jack (very matter-of-fact): Yesterday, a boy was mean to me on the bus.

Me: Oh. Who was mean to you?

Jack: Ben.*

Me: The Ben at our bus stop?

Jack: Yes.

Me: What did he do?

Jack (still very matter-of-fact): He squished me so there was no room for me on the seat.

Me: Oh. What did you do?

Jack: I told the bus driver. She said she would talk to him.

Me: Jack, that was the right thing to do. I'm so proud of you.

Jack (thrilled): Thanks, Mom!

On the surface, this is a rather ordinary conversation between mom and son, but Jack has autism, which made the ease and simplicity of this exchange rather, well, shocking. He answered all my questions directly and clearly. He stayed on topic, without a single odd noise or movie line or memorized speech. He didn't flap his hand, make funny faces, or repeat himself either.

For those of you who've never tried to get information out of a child with autism, please believe me when I say that this conversation was a miracle.

As an added bonus, his response to the squishing was completely correct and appropriate given his age and the age of the squisher.

Now, if I could only get him to tell me one thing--just one blessed little thing--he did in school today....


*Name changed

Weekly Giggle #22

Yesterday afternoon, while our family walked Miss Daisy, Jack, our 8-year-old, was making the most annoying train and pokemon noises. He does this pretty much all the time (it's a behavior of autism to make repetitive noises), and while George and I are mostly good at tuning out these these meaningless sounds, sometimes it just gets to be too much, even outside. Such was the case yesterday, when George and I both told him to stop. His reply:

"I can't help it. It's just who I am!"

We know, honey. We know.

From another kid, this might seem like an excuse or back-talk, but not from Jack. In his case, he's pretty much stating a fact.

I would dearly love to know what movie he got this from (another symptom of autism is using movie lines, often quite appropriate to the situation, rather than spontaneous speech to communicate). Suspects include How to Train Your Dragon, which is a totally wonderful Dreamworks movie. We haven't had that one long enough for me to have it memorized myself.

Whatever the source, Jack's growing self-awareness and ability to communicate it are delightful!

Jack and Hoover

Jack loves Hoover. He loves Hoover's ears and how soft they are. When we first told Jack that Hoover was dying, Jack knew what that meant because he's asked us repeatedly about Shemya, our first dog. My mother painted a beautiful portrait of Shemya and we have pictures of Shemya scattered all over the house, so even though she died before Jack was born, he knows of her. He knows that she died of a heart attack when she was old, that she's not with us anymore, and that she is in heaven. He also knows that Great-Grandma Ann died when she was old and is in heaven, too.

When we told him that Hoover was old and dying, he went into denial. "We are NOT saying good-bye to Hoover!"

A few days after we broke the news, Jack played his guitar and sang, very matter-of-factly:

"I don’t want you to die. Please don’t do it. Please don’t diiiiiieeeee!"

One morning last week, Jack saw Hoover lying on the ottoman and asked, "Is Hoover dead yet?" When I said no, he said, "Okay." He then went to Hoover and rubbed his ear. I wonder if he's afraid of touching Hoover once he's dead, but because of his autism, Jack can't answer questions like that. It's extremely unusual to get a good answer to any question that isn't completely concrete and specific. "What do you want to eat?" "Do you want to ride your bike?" These are questions Jack can answer.

"What are you thinking about Hoover's dying?" That's hard for us to know beause if Jack answers at all, he'll usually say, "I love you, Mommy" or "I don't want to talk about that now." How much beyond the literal does he understand? That's been harder to discern.

Saturday night, as we went upstairs to go to bed, Jack paused at my mom's portrait of Shemya. He kissed two of his fingers and placed them on the glass over Shemya's mouth and said, "Don't worry, Shemya. He'll be with you soon."

It seems to me now that Jack understands enough, probably more than the rest of us do. I just wish the understanding made it easier to say good-bye to our furry friend.

One Kind Word

A Japanese proverb states, “One kind word can warm three winter months.” Given the winter we’re having in the midwestern United States, I wish this proverb were literally true. But as a metaphor, well, it works just fine.

Let me give you a bit of back story, first. On the autism internet forums, a recurring theme rears its ugly head far too frequently: mean strangers judging parents whose children have meltdowns in public. Many children with autism have major tantrums that result from an involuntary fear response to what typical people would see as a benign stimulus. Maybe it’s a noise that scares them, or a flash of red in their peripheral vision. Maybe it’s eye contact from a stranger or the flicker of fluorescent lights. Whatever sets them off, it’s not like they choose to pitch a fit. Their bodies flood with chemicals they can't control. They are terrified.

Unless the child is small enough to be safely removed to a private place, parents have to make sure he can’t injure himself and basically wait it out. A mom or dad can talk calmly, hold the child or sit near him, but most often, the tantrum will end more quickly if it’s completely ignored, especially if it is the result of sensory overload. Grabbing or yelling at the child just adds to his confusion and fear, and drags the tantrum out longer.

Often, however, strangers misunderstand what is going on. They think the parent ought to pick the child up off the ground, whack his butt, and ground him for a month. And sometimes people go beyond throwing dirty looks at the "brat" and his stupid parent; they actually throw hateful words instead. One mom, whose nonverbal, cognitively challenged son was melting down in the produce section of a grocery story, actually had a stranger yell at her: “You call yourself a mother! Your son is screaming and you’re doing NOTHING!” Of course the mom was doing nothing. That’s what worked with her son. When I read her story, I wanted to crawl through the internet, find her, and tell her to her face that she is a wonderful mother.

One afternoon last December, I was at Barnes and Noble (surprise!). The clerk behind the counter welcomed me as a regular customer and then glanced behind me and said, “Some parents are useless.” I looked over my shoulder and saw a man carrying a crying two-year-old girl through the store. Nothing unusual in that. She probably just needed a nap.

I turned back to the clerk, who said, with righteous indignation, “My children never behaved like that in public. They knew what would happen to them if they did!” I was stunned and wondered what she would think about some of the things we do with our children, both of whom had the bad manners to cry in public at the age of two.

As I walked to my car, feeling colder than the weather, I thought how terrible words are when they lack the warm breath of kindness. And I thought of Jesus’ words, “As you judge, so shall you be judged.”

That’s the scariest verse in the Bible.

A month ago, while I was sitting in the waiting room at Children’s Rehabilitation Clinic, a boy of about five or six melted down in a hard-core, violent tantrum. The father sat on the floor just a few feet from me and held his flailing son. Very calmly, he said, “I will hold you until you stop hurting yourself. Then I will let you go.” A speech therapist came out to get the boy for his session but after briefly attempting to redirect him, she and the father wisely decided to give him the day off. The therapist told the boy, “Since you’re upset today, we’ll just wait until next week. Okay? I hope you feel better soon.” She walked away, and the dad stood there for a few minutes over his son, who was now lying on the floor, spinning and moaning but no longer hurting himself.

The father knew, I’m sure, that any effort on his part to quiet or redirect his child would not work and might provoke worse behavior. He sat down next to me to wait it out.

Before my experience at Barnes and Noble, I would have said nothing, thinking that politely ignoring the situation was best. But since all the action had happened four feet in front of me and I could imagine how sad this father must be, I decided a kind word was in order. I glanced up at him and said, “Nicely handled.”

He looked at me like I was an alien from another planet. Then he said, astonished, “Thank you. Thank you very much.” Every time I think about his surprise, my heart breaks. Why should kindness surprise anyone? Is it such a rare commodity?

This Monday, I was in the waiting room again, and the father approached me. He thanked me for my kind words and introduced himself. We chatted for a bit. He is a mechanical engineer who lost his job a year ago. He’s building a wooden go-cart with his son and coaches him in soccer. He told me his son rarely has meltdowns like he had that day. I’m glad of that.

One kind word can warm three winter months.

Let’s all commit some global warming.

If you need a little inspiration, listen to the Youngbloods sing Get Together. Smile on your brother, indeed.

More Jack-Speak

A brief introduction to the Jack lexicon.... Thomas refers to Thomas the Tank Engine. Blue Fish Museum refers to the Newport Aquarium. Ben 10 refers to a Cartoon Network show. Also, our family must spell the word walk because the dog knows the word and immediately starts freaking out when he hears it. For background on Jack's language issues and autism, see this post.


Jack [daily, months before his birthday]: For my birthday, I want a Thomas cake and lots of presents and a big Pokeball and a Thomas bed and to go to the Blue Fish Museum.

Jack [very serious]: Mommy, you are not going to turn into a snake. Okay?
Me: Okay.
Jack: Promise?
Me: Yes.

Jack [looking at the newspaper]: Why don’t those people have color?

Jack [daily, months before his birthday]: Mommy, am I going to the Blue Fish Museum for my birthday?
Me: Yes, Jack.
Jack [joyous]: Thank you, Mommy. I love you so much!

George went into the bathroom to check on Jack, who was in the tub. Jack had his pitcher ready to pour rinse-water over his head.
George: Would you like me to pour that on your noggin?
Jack: No. [Pause.] I’d like to be alone with my bath now. Go watch your movie, and I’ll be there in a minute. Okay?
George: Okay.

Jack [daily, weeks before his birthday]: For my birthday, I want a Thomas cake and lots of presents and a big Pokeball and a Thomas bed and to go to the Blue Fish Museum.

Jack [pitiful voice]: Mom, it’s not dark outside.
Me [perky voice]: No, it’s light out. It’s morning.
Jack [more pitiful voice]: I don’t WANT it to be light outside.
Nick [helpfully professorial]: It’s summer, Jack. The sun comes up earlier.
Jack: Noooooo!

Jack [daily, weeks before his birthday]: Mommy, am I going to the Blue Fish Museum for my birthday?
Me: Yes, Jack.
Jack [joyous]: Thank you, Mommy. I love you so much!

Jack [in trouble and forced by the Evil Mom Lady to go to bed 15 minutes early]: I don’t want to go to bed. I want to LIVE!!!!!

Family out on a walk around the neighborhood.
Jack: I’m taking these pine cones home.
George: No, you’re not.
Jack [rebellious]: Yes, I AM!!
Me and George [incredulous]: WHAT?
Jack [cute, sing-song voice]: Never mind.

Jack: Are you pouring your wine?
Me: Yes.
Jack: Mommy, do little boys drink wine?
Me: No. But you can smell it if you’d like.
Jack: Um, sure. [sniffs wine] Mmm. That smells good.
Me [incredulous]: Really?
Jack [very matter-of-fact]: Yes. I smell strawberries.
George [picking up his own glass and sniffing]: I get strawberries, too. Very impressive.

Jack: Mommy, do you promise you won’t turn into a snake and eat me.
Me: I promise, Jack.
Jack: Do things want to eat me?
Me: No, nothing here wants to eat you. Why?
Jack: Because I don’t want you to turn into a snake.

At Kroger a week before his birthday, Jack sees a Ben 10 cake and enters a frenzy of joy.
Jack: Mommy, I want a Ben 10 cake for my birthday!
Me: Don’t you want a Thomas cake like always? You love Thomas.
Jack: No, I definitely want a Ben 10 cake. It’s unusual for me.

George: Boys, we are taking Hoover for a W-A-L-K in ten minutes. Get your shoes on.
Jack: I don’t want to go!
George: This isn’t a choice. We’re going. Period.
Jack [angry]: I don’t like any periods. I hate periods!
Me: I hate periods, too! But we’re going on a W-A-L-K anyway.

Jack [twenty times the day before his birthday]: Mommy, am I going to the Blue Fish Museum for my birthday?
Me: Yes, Jack.
Jack [joyous]: Thank you, Mommy. I love you so much!

Jack [on the morning of his birthday]: Mommy, am I going to the Blue Fish Museum for my birthday?
Me: Yes, Jack.
Jack [joyous]: Thank you, Mommy. I love you so much!

Jack [from the back seat of the car on the way to the Blue Fish Museum]: Mommy, where are we going?
Me: The Blue Fish Museum.
Jack [astounded]: Really, Mommy? Oh, thank you. I love you so much! I am so HAPPY!

September Can't Come Soon Enough

Our six-year-old son Jack has atypical autism. Three years ago, he could communicate wants and needs fairly well, but most of his intelligible speech consisted of Blue’s Clues dialogue, “I love you, Mommy,” and “I want chocolate milk.” While his speech is definitely not developing typically, he has made enormous progress. He does not babble anymore, still says “I love you, Mommy,” and (Praise God!) uses more and more spontaneous speech every day. As you read these examples of Jack-Speak, you’ll see how incredibly blessed we are and how hard it is not to laugh all the time.



Jack: I miss Thomas. Mommy, after it’s September, can we go see Thomas?
Me: Yes, Jack.

Jack: Mommy, Thomas is a steam engine, and he’s gots blue paint, and a black funnel, and blue paint, and he’s gots a number 1, and I want to see Thomas just like this Thomas [holds up little blue Thomas engine]. I’m going to see him in September. Mommy, do I go see Thomas in September? I miss Thomas. He’s a steam engine, and he’s gots blue paint, and a black funnel, and axles, and wheels, and he has the number 1 on him. [Note: A real train that looks like Thomas visits our area each September.]

Jack [getting off the bus one day in January]: Mommy, it’s trying to get warm outside!

Jack: Mommy, what are those pipes for?
Me: The sewer.
Jack: What’s that?
Me: When you flush the potty, what’s in the toilet goes into the sewer pipes.
Jack: But what time is it?
Me: Eleven o’clock.
Jack: Why is it eleven o’clock?
Me: It just is.
Jack: I’m going to miss Thomas.
Me: I know.

Jack: Mommy, are we going to Target?
Me: Not today.
Jack: Mommy, I want a Ben Ten watch just like Jacob.
Me: Not today, honey.
Jack: My name is Jack. Mommy, I want a Ben Ten watch just like Jacob.
Me: Not today, Jack.
Jack: But I thought you loved me!

Jack: I miss Thomas. Mommy, after it’s September, can we go see Thomas?
Me: Yes, Jack.

George: Jack, are you eating toothpaste?
Jack: No.
Nick [tattle-tale voice]: I saw you!
Jack [happy voice]: Sorr-eeee!

Jack: Mommy, can I just be naked in my room?
Me: Sure, Jack.

George [in a stern voice]: You don't hit me or speak to me that way. Period.
Jack: Don't call me Period.

Jack: I miss Thomas. Mommy, after it’s September, can we go see Thomas?
Me: Yes, Jack.

Kindergarten Aide: Jack, come to the table. It’s time to write your story.
Jack: Bossy Boots.

Me: I want to steal your nose. [I try to pinch his nose between my knuckles.]
Jack: No, no! I don’t want you to steal my nose!
Me: Really? Well, can I kiss it?
Jack: Okay.
Me [after kissing his nose]: Your nose is so cute!
Jack: And my face is, too.

Jack: Can I have a juice full of a box?

Jack [yelling]: Mommy, come watch me!
Me: Okay. [I walk to top of basement stairs, look down, and see Jack, in his underwear and socks, jumping on the little trampoline.] Jack, why are you naked?!? Put your clothes on!
George: [uncontrollable and unhelpful laughter from kitchen]
Jack: But Mommy…[smiling]
Me: Put your clothes on, naked boy!

Jack: I miss Thomas. Mommy, after it’s September, can we go see Thomas?
Me: Yes, Jack.

Jack: Mommy, can I put on my pajamas?
Me: No, it’s not seven o’clock yet.
Jack: But I thought you loved me!

Jack: I’m so disappointed in you, Mommy.
Me: Why?
Jack: Because I want to see Thomas.

Me: Come here, Jack. I need some lap time with my baby.
Jack: I’m not a baby, Mommy. I’m just a big boy.
Me: How big are you?
Jack: I’m just bigger than an ant.
Me: Bigger than an ant?
Jack: Yeah.

Jack [to George as he leaves for work]: You be careful with your new car, okay, Daddy. Don’t die, okay.

Jack: I miss Thomas. Mommy, after it’s September, can we go see Thomas?
Me: Yes, Jack.

Me: It’s time to brush your teeth and go to bed.
Jack [walking up the stairs, very sad]: I was just thinking about Thomas.
Me [to George]: Oh, the tragedy of it all.
Jack: Mommy, I was not traveling. I was just thinking about Thomas.

Jack: Mommy, can I have M&Ms for breakfast?
Me: No. You may have a banana or cereal.
Jack: But I thought you loved me!

I ask Jack to let Hoover out, and he starts to do so but decides he needs to pee instead, so he runs to the bathroom. I ask Nick to let Hoover out (because this is why I had children in the first place…to let the dog out), and Jack yells from the bathroom, “Remember, Hoooover!!! Safety firrrrrst!”

Jack: Daddy, my tummy wants a juice box.

Jack comes inside rubbing his knee.
Me: What happened?
Jack: The blood started to bleed me.

Jack: I miss Thomas. Mommy, after it’s September, can we go see Thomas?
Me: Yes.

Jack [in trouble and not allowed to watch movies, comes to me carrying his Stitch stuffed toy]: Mommy, Stitch wants to watch Winnie the Pooh.

Jack: Mommy, does you have your pajamas on?
Me: Yes, I do.
Jack: Oh, Mommy! [throws arms around me] I’m so proud of you! You are my best friend!

Me [in silly voice reserved for the dog]: Hoover, my brother, come here and give me kisses.
Jack [walks over from across the room, very serious]: Mommy, look at me. I have something to say to you.
Me: What is it, Jack?
Jack: Mommy, Hoover is not your brother. He is a dog, okay?
Me: Oh, okay Jack.
Jack: Nick is my brother. Okay?

Jack: I miss Thomas. Mommy, after it’s September, can we go see Thomas?
Me: I’ve already answered that question. What do you think?
Jack: Yes.

On a fish-shaped piece of art, Jack has written, “Penguins like fish with sprinkles.”

Jack: Mommy, you are my best lady. I love you.

Jack: I miss Thomas. Mommy, after it’s September, can we go see Thomas?
Me: Yes, Jack.


Note: If you want more information on Jack's language development and autism, please visit my Questioning Autism blog.

More Questioning

I have started a second blog about autism called (surprise!) Questioning Autism. For those who don't know, I am writing a book on autism, and this new blog is basically to help with that project. I would like Questioning Autism to evolve into a useful resource for other parents and family members of people with autism.

Each week, I will post a question asking people in the autism community to share their answers either in the comments or via email. Most of the questions will probably be aimed at parents but other relatives, teachers, doctors, and therapists are welcome to add their two cents anytime. As time goes on, I'll also add links to useful resources and information on other blogs and websites.

I know many of you will not be interested in subscribing to Questioning Autism, but if you know anyone who has or works with a child on the autism spectrum, please forward this link to them. Also, any ideas you have for promoting the blog online would really help, too. My online friend Joan B kindly promoted Questioning Autism and Autism Awareness Month on her blog, Paperlicious. I've linked to her blog before because it's so funny and her stamping is divine, so if you haven't checked it out, I highly recommend it!

For those of you who are part of the autism community, I am asking for constructive input, suggestions for things I can do to make the blog more helpful and interesting, sites I could link to, questions I could ask, etc. I really appreciate any help or suggestions anyone can give!

For those of you who subscribe to Questioning my Intelligence, thanks so much for your support and encouragement and comments and emails. You have no idea how grateful I am. Next essay coming soon...be prepared to laugh!

Godiva Chocolate

In early December, 2006, I found myself at Barnes and Noble Booksellers. This should surprise no one who knows me. I adore books and create any excuse to surround myself with them, browse through them, smell them, buy them. I even read them. Happily. Enthusiastically. Voluntarily. Voraciously.

On that particular day in December at Barnes and Noble, I bought something or several somethings—honestly, I don’t remember. I do remember that the check-out clerk asked if I would like to donate a Godiva chocolate to disabled children in our area.

Who can say no to such a request? I pictured in my mind a small child with a serious disability—say, Down syndrome or paraplegia—enjoying a piece of chocolate. That chocolate wouldn’t change his life or make it easier, but absolutely no one can be unhappy or worried while eating chocolate. If Elvis had eaten more chocolate and done fewer drugs, he’d still be alive, don’t you think? Buying a chocolate for a disabled child was the least I could do. So I did it and checked my to-do list for the next holiday errand. I didn’t give that chocolate another thought.

A week later, I went through Jack’s backpack to clean out the day’s work: artwork of Christmas angels made with his handprints, beaded pipe cleaners hooked into Christmas ornaments, the usual assortment of notices from the teacher regarding the Christmas party, pajama day, the book exchange. At the bottom of the mess was a foil-wrapped Godiva chocolate with a note attached.

I’ll give you one guess what that note said.

My child. Disabled?

Of course Jack is disabled. He had been receiving services through IDEA—the Individuals with Disabilities Education Act—for three months. He had had a diagnosis of Pervasive Developmental Disorder, Not Otherwise Specified for five months. He attended speech and occupational therapies at Children’s Hospital and went to two different schools to meet his needs. My schedule was topsy-turvy just trying to get him where he needed to be each day.

None of this added up to “disabled child” for me that day at Barnes and Noble. Then, my definition of “disabled” included only huge, obvious, “bad” things that keep people from functioning normally. Disabilities are made up of amputations, or assistive apparatuses, or senses that don’t work, or brains that can’t learn, or bodies that can’t speak or walk or move easily. Disabilities are really hard things, things that create barriers in life that most people don’t face, barriers that other people face.

The Godiva chocolate in my hand laughed mockingly at me and said, “Your son whom you love more than life itself is ‘disabled.’ What do you think about ‘disability’ now?”

I just hate it when the universe dope-slaps me.

I’ve learned that we really do have a choice how to react to situations like this. It’s easy—and pointless—to take these ironic dope-slaps personally. The universe isn’t picky about choosing its victims, and absolutely every person on this planet gets dope-slapped at least a few times in the course of life. When we take it personally, we are the ones who suffer, mainly from that dreadful waste of time called self-pity.

This reminds me of an apt quotation from the sci-fi series Babylon 5. (You see, I’m a geek as well as a dope.) Marcus, my favorite character, said: “I used to think that it was awful that life was so unfair. Then I thought, wouldn’t it be much worse if life were fair, and all the terrible things that happen to us come because we actually deserve them? So now I take great comfort in the general hostility and unfairness of the universe.”

On that December afternoon two years ago, in the face of the general hostility and unfairness of the universe, I chose to laugh at the mocking bit of fine chocolate. Yes, Jack is disabled. His disability isn’t so obvious as Down syndrome or paraplegia, but it is real and it is hard. It does put up barriers for him that most people don’t face. As Jack’s mother, however, I had instinctively chosen to focus on his abilities rather than thinking him “disabled.” Even though his brain works and learns differently from other kids’ brains, I focused on the fact that it does work and it does learn. His hands don’t do fine motor tasks as well as other kids’ hands, but they are learning and can already do a lot. He still has difficulty telling me a story or answering questions, but his speech improves daily.

This is how love sees disability.

Far be it from me to promote political correctness (I prefer good manners), but the PC term “differently abled” has merit. It’s all in the perspective, how you look at it. Yes, we all face really hard things in life, whether we qualify as disabled or not, and these challenges can overwhelm us at times with worry and stress and fear. Been there, done that. Haven’t we all?

But by shifting our focus we’re able to see those challenges differently. To a certain extent, it really is “all in our heads.” How many mothers of children whose disabilities are more severe, more obvious, more challenging than Jack’s see their children through the same filter of love, that same focus on ability rather than disability? My big mistake was in assuming those families were different from mine.

One day last summer, while I waited for Jack to finish speech therapy, a mother and son sat down near me. The son was hard to miss: a large teenager, nonverbal, squinting, tongue sticking out of his mouth, playing with his hands, barking. Well, it sounded like barking. His mother patiently settled him, asked if he wanted a drink, handed him a sports bottle with a straw, told him gently to keep his tongue in his mouth, made small talk without expecting a verbal response but was attentive to nonverbal cues. I was struck by how patient and calm she was. Every time he barked, she smiled. She never shushed him.

There aren’t many moms who could go out in public with a barking teenage boy and make it look like the most natural thing in the world. By the grace of God, she pulled it off and made it poignant and beautiful. I saw God in action in the waiting room.

As it’s impolite to stare, I turned back to my book but was distracted when I heard her speak to another waiting mother: “Oh, that’s his happy sound. He makes it all the time. He is always so happy and brings such joy to our lives. I don’t know what we would do without him.” Love literally glowed from this mother. You could tell she wanted to share it with the world, wanted the world to see her son the way she did. I looked at the young man with fresh eyes. I could see what she meant. He did show joy; I had missed that before because I was looking only at his disabilities.

No doubt the universe heaped its general hostility on this mother and son. No doubt she has felt frustrated, scared, and angry, and has wondered why. No doubt her son is severely disabled. But she made a choice at some point to accept her son for who he is, to see joy and love in him, and to give joy and love to him.

Don’t we all long for acceptance? Don’t we all long for love and compassion and understanding that is unconditional? But how often do we give that sort of love? It’s easy to accept someone who’s just like you, who acts like you, looks like you, and shares your beliefs, interests, language, and politics. It’s harder to accept difference in any form. Much harder. History is largely the record of our collective failure to accept difference.

I don’t know about you, but I don’t want to be judged or dismissed or ignored or feared, and I certainly don’t want either of my children treated that way. We’re all different, but we are also all children of God, human beings created in His image with great capacity for compassion, love, and joy.

An American soldier stuck in the sandstorm during the invasion of Iraq said, “Embrace the suck.” He couldn’t change the weather or the fact he was in it, but he could change his attitude. He embraced the sandstorm just as that mother smiled each time her child barked in joy. The outside world may see our challenges, whatever they are, as uncomfortable, painful, unfortunate, disabling, or tragic, but we don’t have to see them that way at all. When the universe is hostile, we need to embrace the suck, and sometimes we can even transform it into something beautiful through love. Doing this is hard. It requires courage to stand up to the universe’s hostility and let go of a lot of indulgent wallowing in self-pity, but it’s worth the effort. At least I believe it is.

As for the Godiva chocolate…I ate it myself because Jack won’t touch any chocolate that isn’t an M&M or cake frosting.

Don’t you just love irony?

It’s All in the Numbers…or Not

When I turned 16 years old, I thought, “Wow, I’m halfway to 32.” Thirty-two looked really, really old and far away at the time. Today, I turned 42, so I’m halfway to 84. Weirdly enough, 84 doesn’t look nearly as old as 32 looked then.

Much of what I thought at 16 turned out to be wrong, and not just the idea that 32 was old. I felt like I was just getting started at 32 because by then I realized that life experience is the best teacher ever and I still had much to learn. At 16, however, I didn’t appreciate the value of life experience. All I cared about was acquiring knowledge from books and regurgitating that knowledge on tests and making perfect grades. My life was all about the numbers.

I am not a genius. From early childhood, lots of people told me I was smart—and I was—but my actual IQ score disappointed me. The school counselor gave me an IQ test around age 16, and my score was high but not in the genius range. Since grades were the be-all-and-end-all measure of my worth as a human being (a standard I never applied to anyone but myself, by the way), my IQ score felt like a huge failure on my part. That score became my dirty little secret, a source of shame, something to hide because it wasn’t good enough. At 16, I lacked the benevolent perspective gained only from experience and desperately needed a prescription for Zoloft.

A recent article in Scientific American Mind magazine reported that people with really high IQs and fantastic grades in school are generally not the most successful or happiest in adulthood. Merely good grades, good intelligence, and a good work ethic are more likely to lead to happiness and success. Book learning isn’t everything, so those scores and grades that measure book learning and IQ don’t actually mean much in the grand scheme of life. How is it, then, that so many high-achieving kids and adults never learn this? Why are some—like me—driven to the point where they would rather die than fail anymore at the unachievable goal of academic perfection?

For 16-year-old me, the answer to that question had two parts. First, my personality had perfectionist tendencies and a teeny, tiny bit of OCD. (Those of you who know me are laughing right now; I can hear you.) Second, while everything I did was wonderful in my mother’s eyes, my dad saw me differently. Here’s a random sampling of his commentary on my accomplishments: “No one ever remembers who finishes second.” “You made four A’s and an A plus, so why aren’t they all A plusses?” “You got a 99 on your chemistry test. Why wasn’t it 100? A careless error? Don’t let it happen again.”

Combine my over-achiever personality with years of this sort of motivational talk, and it’s no surprise I felt like a failure at 16. You’ve heard the saying “What doesn’t kill you makes you stronger.” Well, George recently encountered a variation on it: “What doesn’t kill you really hurts and sucks a lot.” So very true. Life experience eventually taught me that beating myself up over test scores and grades was pointless and cruel, that those numbers have only limited usefulness in real life, and that they bear no correlation at all to my value as a person.

This enlightened attitude comes in handy these days. Our son Jack has autism, and Jack’s brain just doesn’t understand why he should care a fig about what grown-ups want him to do. When confronted with a testing situation, he doesn’t think, “Gee, this grown-up really wants me to do this, so I better do it well.” He thinks something like this: “Why is this person asking me what letter is on this sheet of paper? There’s a fly buzzing around. Buzz off, fly! Oh, look! The walls are blue. I love blue. Blue is my favorite color. Thomas is a blue tank engine. What’s under the table? That woman is tapping the paper. How annoying. Oh, okay, that’s the letter P. Can I go play with my cars now?” You can see how he might not score very well on tests, especially if they are timed. Fortunately, he’s not bothered at all by his scores yet, and I hope it stays that way.

His teachers, however, have a different attitude. At Jack’s last parent-teacher conference, his kindergarten teacher and special education teacher both dwelled on how low his DIBELS score was and what we need to do to bring it up. For most children, the DIBELS test is an excellent predictor of future literacy success, and our district administers it at the beginning, middle, and end of kindergarten. The test results are used to determine which children need serious reading intervention, which need just a bit of intervention, and which are doing just fine. I volunteer as a tutor for the middle group, while the lower scoring children go to a reading specialist.

Jack’s DIBELS score wrongly indicated he hardly knew his letters at all. His special education teacher said she was amazed the first time she worked with Jack because he really did know almost all his letters. At first, I was confused. Why did these two teachers—one of whom presumably knows something about autism—care so much about Jack’s score? I said, very politely, “I honestly don’t imagine that Jack will ever do well on standardized tests, at least until we can find a good motivator for him. Besides, he’s not going to learn like the other children, and that’s okay. He can learn and is learning. That’s what’s important.” Duh.

I expected them to relax when they realized I didn’t blame them for the low score, but they just kept talking about strategies for getting his score up. Then it dawned on me why they were so obsessed with the DIBELS. The No Child Left Behind Act places insidious pressure on teachers to focus on test scores. Jack is dragging their numbers down. This realization made me want to say unpleasant, very foul words to the universe in general, but I took a deep breath and reminded myself that getting mad about bureaucratic crap and legislative stupidity is a waste of energy. (I learned that lesson through years of experience as a dependent military spouse.) Plus, taking my anger out on the teachers would be horribly unfair. I deeply appreciate their efforts on Jack’s behalf and tell them so as often as I can. They are doing a great job; Jack has made wonderful progress in the last three months. I’m particularly happy that he is finally showing interest in early literacy skills. But I refuse to care a fig about his DIBELS score. He’s not going to be left behind. Lots of people are seeing to that.

My firstborn, Nick, does pretty well in school…except for math. For the last two years, he has struggled with learning his math facts. Those pesky sums and differences just don’t stick in his head. Now that he’s starting multiplication and division, he’s getting particularly frustrated. His third-grade teacher grew alarmed in early October and suggested having him tested. The test results indicate that he probably has a math learning disability.

Unfortunately, Nick fixates on grades just like I used to do. Last week, he brought home a timed test of multiplication facts. He told me and George at dinner that he’d failed a math test. “I got an F minus,” he said. I responded, “What do you mean by F minus? Your teacher didn’t write F minus on your test.” I was certain of this. She’s wonderful and would never do such a thing. “I got them all wrong, so it was an F minus.” In truth, he had gotten most—but not all—of the problems wrong and had written the F minus on his paper himself.

Doesn’t this just break your heart? It sure broke mine.

Early this week, I attended an Intervention Assistance Team meeting to discuss Nick’s math issues. The principal, school psychologist, school counselor, special education teacher, and Nick’s third-grade teacher were there. When I told them about the F minus, every woman at the table gasped in shock and sorrow. I knew we were all on the same page. I also knew we were in a position to do something about it.

After all the discussion of Nick’s scores and grades, the principal concluded, rather boldly and bluntly, “What we have here is a young man of fine intelligence who has a learning disability in math.” I wanted to applaud. If you never attend these sorts of meetings, you don’t know how much dancing around the teachers, therapists, and administrators usually do in an effort to be tactful. To hear someone with the courage to speak the truth, speak it clearly and with great compassion…well, it just made my day.

You see, Nick’s problems with math have been going on for two years now, and finally, he’s getting focused and constructive help. George and I hope he will feel the love and encouragement that surround him at home and at school, and we will do our best to make sure he knows he’s more than a score, more than a grade, more than a child with a math disability. Scores helped us identify a problem, but human intervention and compassion will help him through this.

As for my own numbers…last year, I took an online IQ test, thinking I’d probably grown dumber since age 16, mainly because having children gives you the sensation of having your brain sucked out via your uterus. To my pleasant surprise, my IQ has increased. At this rate, by the time I’m 84, I might even be a genius and am absolutely certain I won’t care in the slightest.

Life is just too rich and complex and wonderful and full to boil it down to a number, unless of course it’s 42, which, coincidentally, is the answer to life, the universe, and everything, according to Douglas Adams, author of The Hitchhiker’s Guide to the Galaxy.

No wonder I’m gloriously happy to be 42 today.

Responding to Autism

Recently, I came across a discussion on an internet forum that got me thinking. Yes, yes, I know “thinking” is dangerous, but I like living on the edge. I have thrill issues.

This particular forum is for parents of children with autism, and the discussion thread that got me thinking was titled “To Tell or Not to Tell.” The person who initiated this thread was curious to know how other parents decided to tell or not tell friends, family, schools, and strangers about their children’s autism.

To tell or not to tell isn’t a choice for many families with disabled children because the disabilities are obvious even to the casual observer. Autism, however, isn’t always obvious. Metaphorically speaking, it’s a big, shadowy, amorphous blob with fuzzy margins and no clear-cut features to define it. Medically speaking, it is a neuro-developmental disorder that involves social developmental delays; a huge variety of speech and communication problems; and stereotypical behaviors that are repetitive, routine, or ritual in nature, and interfere with daily life. (Did you get all that? That’s okay. No one else does either, not even the experts.)

Developmental pediatricians and child psychologists may know immediately that something isn’t right with a particular child, but they spend years studying what to look for and order multiple evaluations by lots of different specialists before they will diagnose autism. Grandma, Aunt Marge, Neighbor Bill, and Stranger at the Grocery Store, however, may not notice anything out of the ordinary.

So…“To tell or not to tell?”

When we began the process of getting Jack diagnosed, we sent out a mass email to friends and family asking for prayers and support. From our point of view, how could we NOT include our family and friends in something so huge? George and I are WYSIWYG: what you see is what you get. To us, not dealing openly with this implies we are somehow ashamed of Jack. Nothing could be further from the truth. We love him and think he’s wonderful no matter what label is affixed to his medical or school record. If the label gets him the help he needs, it serves a fine purpose as far as we’re concerned.

But there are two sides to telling: someone does the telling, and the people who are told do the reacting. Sadly, many parents of children with autism have to deal with unpleasant reactions. They hear comments like, “There’s nothing wrong with him that a good spanking wouldn’t cure.” Or, “You’re over-reacting. He’s fine.” Or, “If you just do this, he’ll be normal.” It is sad how many parents hear these things from the very people whose support they desperately need: family and friends. These reactions make it very easy to understand why parents might decide not to tell.

Over two years ago, when we started this journey with Jack, most everyone we told trusted our judgment and offered up love, support, and prayers. But one person boldly declared to me, “There’s nothing wrong with this kid, and he certainly doesn’t have autism!”

What are you supposed to say to a comment like this?

I had no idea, so I said something vague and noncommittal. I wasn’t angry about the comment, just taken aback. I understand people honestly don’t know what to say in situations like this, and denial may seem a reasonable, compassionate response. People say unhelpful things, but rarely do they intend to be mean or rude or insulting. He certainly didn’t, and I knew that. It would have been out of character for him.

Nevertheless, many other parents are highly insulted and hurt by these sorts of comments and vent angrily on the forum. One woman’s sister, who has no children but raises dogs, told her that she just needed to discipline her autistic son more so he wouldn’t be such a disruption at family functions. The offended mother asked on the forum, “What am I supposed to do? Put a choke chain on him? Smack him on the nose?” Such an angry reaction is perfectly natural, largely because these parents are grappling with something that is huge and scary and life-altering. They do not need criticism or advice, just hugs and support.

People who have never experienced this and know little about autism (or worse, have seen the movie Rain Man and think they know everything about it) just can’t understand. When you bring a child into this world, you generally assume he or she will be “normal,” however you define that word. When you find out this isn’t the case, that your child has a brain disorder for which there is no cure…, well, let’s just say it’s a shock. In this state, parents can become emotionally fragile, even more sensitive than they might usually be. When someone questions their judgment, which is based on professional medical evaluation, they can easily get defensive and flip out.

You can’t really blame them, can you?

Jack’s official diagnosis was Pervasive Developmental Disorder—Not Otherwise Specified, mildly affected—or atypical autism. Most people who meet Jack casually don’t see any problem at all, but he has significant delays in social development and speech, along with sensory problems and delays in gross and fine motor development which sometimes accompany autism. Unlike more severely affected children, he has good expressive language, is empathetic and can read facial expressions, and is easily redirected most of the time. He made so much progress socially in the last eight months that his developmental pediatrician got choked up at his last check-up. Sadly, developmental pediatricians don't always see that kind of dramatic improvement in their autistic patients.

Jack is so blessed. His brain is working hard to rewire itself to function more normally. Not all kids with autism have brains that can do this. Jack’s progress, however, is a direct result of his own hard work as well as the dedication of half-a-dozen therapists and doctors who provide expert treatment; wonderful teachers and aides at two different schools who respect him and cheer for him and make him work; a church, family, and friends who accept and love him; and parents and a brother who pay attention to him and heap love on him daily.

Last year Jack’s teacher asked him, “What is the best thing about being Jack?”

He replied, “Love.”

Think about that for a minute. All these people pulling for Jack have surrounded him for over two years with their love and prayers, and even at the age of five, he knew it. Would our church, Jack’s typical preschool, friends, and family have done this if we didn’t tell them about his challenge in the first place? Would they just think he was a disrespectful little kid who ignored them and refused to look them in the eye? Would they get angry when he wasn’t paying attention to them or when he wandered away while they were talking to him? Would they think he was weird when he started acting out Blue’s Clues dialogue with his reflection in a glass door? Would they understand?

One day about a year after the diagnosis, Jack had a substitute gymnastics teacher, and I decided to conduct an experiment: I didn’t tell her. After class she informed me she had to hold Jack out because he wouldn’t listen. It was obvious by her tone she thought he was a brat. So I told her. She must have thought I was nuts because I smiled benignly the whole time she chewed me out. I deserved a chewing-out for setting her up like that, but I had to test my theory in a safe environment and she gave me that. Sure enough, when she taught him in later classes, she was patience personified.

I’m telling. It works for us.

How people respond, however, is up to them. It’s hard responding well to any friend or family member confronted with a huge challenge, whether that challenge is autism, cancer, divorce, job loss, or death of a loved one. Sometimes you feel like you need to make the challenge smaller for them or fix it for them because your heart is breaking, too, and you want to do something, anything, to make it better. I’ve certainly felt those things when on the responding side.

Now that I’ve been on the telling side, though, I think I’ve figured out what makes a good response. If you find yourself fishing for something to say, try something like this:

“Wow, this is huge. I can’t imagine what you’re going through right now, but I’m here for you. Feel free to talk to me, vent to me, complain to me, cry on my shoulder, punch my sofa pillows, whatever you need. Teach me what this means so I can help you carry this load.”

George and I are so blessed. We have heard variations of this response from Day One of our autism journey, and I simply can’t tell you what a difference it has made, at least not without making a blubbering fool of myself. So I’ll just paraphrase an expert:

The best thing about being the Raihala family is…love.