Mama Be Good

Forwarding Address

2009-09-05T14:00:00.003-04:00

For purely administrative reasons, I have moved my blog to here. Just changing the blog address to match the blog title. If you have previously signed up for email or RSS updates, I apologize, but you must sign up again at the new site. Please also update your favorites to http://mamabegood.blogspot.com/.

I know, I know. Changes. Pfooey. Please follow me to the new location. Pretty please?

There's Always Tomorrow

2009-09-03T19:55:00.006-04:00

The grass in my back yard has reached jungle proportions.
The papers on my desk grow taller by the month.
I never get beyond the front page.
A kitchen drawer has been off its track longer than I have been.
I am behind a full year on the my New Yorker magazines.
I have five massages fully paid for and unused.
I have gift certificates for fabulous restaurants sitting in a drawer.
I haven't exercised in years.
I have photos and photo albums that have never met each other.
I have emails from friends and family that I haven't answered in months.
I haven't sent birthday cards.
I haven't sent thank you cards.
My closet shelf escaped its hooks. A year ago.
My rocking chair is off its rocker.
Seriously.

So what did I do today?
I slid down a slide five times.
I held hands.
I did the high dive into a crash cushion.
I comforted a crying child, a hungry child, an angry child.
I put steps back onto a goblin house.
I pushed a bucket swing. Three separate times.
I found three different pretend garage buttons.
I played.
I made sense of senseless phrases.
I shared an ice cream.
I listened to countless ignition sounds.
I distracted.
I made ghost juice.
I listened to the same questions.
I explained screaming girls on the playground.

And at the end of the day I wondered "Did I do enough?"
Like every other parent of a child with autism.

A My Name is Alice and My Boyfriend's Name is Andy

2009-09-02T20:45:00.004-04:00

Jack, hiding something behind his back: I found something, Mommy.
Me: Oh, really? What is it?
Jack: It's greenish.
Me: Hmmm, a frog?
Jack: No. It starts with the letter "b."
Me:

Okay, see that blank? That's stunned silence. Starts with the letter "b?" Where in the world did he learn this? Jack has known his letters since he was eight months old. That ought to have clued us in to something right there. We could say the letter and he would find it on his giant floor alphabet mat. Over and over, without error. As an infant, he would stare at the words on the page of a book instead of the pictures. He loved looking at bold letters as well as negative space and seemed to avoid looking at pictures. In the back of my mind, I was conflicted about whether hyperlexia was particularly helpful. So, post-diagnosis, we've had an academy of life, purposefully avoiding academics and rote learning to focus on social and emotional development. He's forgotten some letters from time to time, confusing M's and W's, and his numbers are definitely lagging. But the thing is, we know he can pick them up very easily. Are you kidding? Eight months old and knew all his letters.

Me: Uh, starts with a b? Letter B - Buh - Banana?
Jack, peeks behind his back: No.
Me: Letter B - Buh - bunny? Have I suddenly become a first grade teacher? What's with the phonics lesson?
Jack, peeks again: No.
Me: Letter B - buh - boy?
Jack, more peekng: No.
Me: Okay, I give up. I can't guess. What is it?
Jack: It is ... a ... a ... a ball!
Me: Wow, Jack! That is GREAT! Ball DOES start with the letter B! That's really good!

I was so excited! And he was very proud. He gave me a big smile and a kiss and walked away with his greenish ball. Still, where in the world did that come from? Maybe he's ready for letters!

***The next day ***
Jack, hiding something behind his back: Mommy, I found something.
Me: Yes? What letter does it start with?

I'm already trying to recreate the moment. Ah, when will I ever learn.

Jack: Mommy, what does lollilop start with?

***And the next day ***
Jack, hiding a lollipop behind his back: Mommy, I found something that starts with a 'b.'

See, I know this is a great game and that he just wants to recreate that very fun moment when I was excited and he was proud.

Still, here's the thing. He just taught himself, with no prompting on my part, how to say the letter L. And HE told ME when he did it.

Jack: Here come's Wuca.
Me: Hi, Luca.
Jack: LLLLLuca. Mommy, I just said something.
Me: Luca?
Jack: Wisten, Mommy. LLLLuca.
Me: WOW, Jack!! You just said "L!"

***Later that day***
Jack, talking to himself: ffffff.
Me: What are you saying, sweetie?
Jack: Frannie starts with "F."

So, where is this explosion of letters coming from? I don't know.

Okay, you have to know that I don't stop at "I don't know." There's a bit of analysis coming. If you choose not to go shoeshopping now rather than read the rest of my post, be forewarned.

I begin to wonder why this spontaneous learning should excite me so much more than, say, working through emotions. Of course, I place a high value on academics. I loved school. Over and over again. All the way through law school, which is bizarre. Ask anyone who's been through it. And I know that, culturally, we love academic achievement much more than say, emotional intelligence. There just aren't colleges that award a bachelor of social and emotional development. And that kind of development is so hard to grade. Can you imagine grade inflation for, say, the really good listener?

Yes, I know I got really excited about and Jack loves my enthusiasm. But I am just as excited by his social and emotional achievements. They just don't usually occur spontaneously. Maybe that was the difference. Even this week, we've been working on the distinction between so sad you can cry (like when Mom moves your blanket and chairs / pretend garage in the middle of the night) and just sad enough to feel bad and say Awww (like missing our cousins). Don't get me wrong - I love this work. It's important. It's the foundation. It's what he needs.

But ... since he is feeling the pull of the letters, I'm hopping the alphabet train. Grab that interest and run with it. We're off to see the wizard: The wonderful wizard of O's. And the wizard of Awws. And the intersection of the two.

The Hero's Adventure

2009-08-29T11:18:00.012-04:00

We have only to follow the thread of the hero path,
and where we had thought to find an abomination, we shall find God.
And where we had thought to slay another, we shall slay ourselves.
Where we had thought to travel outward, we will come to the center of our own existence.
And where we had thought to be alone, we will be with all the world.
-- Joseph Campbell, The Power of Myth

Call it a process. We are taking baby steps here. As Stuart Smalley, would say: and that's ... okay.

A few months ago, we began revealing our son's diagnosis to our family and friends. JBear had been diagnosed with autism for a little over a year. I'd gone through an emotional journey of grief and acceptance. And I felt terrible about hiding. As long as the autism diagnosis was a secret, it seemed like something to be ashamed about. And that made me feel terrible. And embarrassed. My son is a joy, the light of my life, and a really cute kid (go ahead, ask anybody). He is not defined by the limits of his diagnosis. Why in the world am I embarrassed about a neurological condition? So it was a relief to come clean. The first few times, I felt awkward getting the words out. Now it's easier. We have been fortunate. We've received so much support and kind words.

I struggled for a long time with the idea of "passing." When JBear was still a toddler, I thought, we'll do therapy, we'll work really hard, and he'll be fine in time for school. So I best not reveal his diagnosis. I mean, what if his (theoretical) future friends find out? What if the (theoretical) moms find out and don't want their kids hanging out with us? What if a (theoretical) private school rejects him because of the diagnosis? Notice a (theoretical) theme here? Where were these theoretical people who would shun us? Maybe I'll meet them later. But all our real family, and real friends, and their real kids have given us nothing but love.

Still, I actively thought about JBear's flying under the radar, fitting in, "passing" for "normal." So now I'm embarrassed again. "Passing?" "Normal?" I mean, how Neanderthal can I be? Here I am again, subconsciously trying to get rid of the telltale signs. The flapping hands, the looking downwards, the pacing, the running, the watching every door open and close, the lack of conversation with anyone outside family. (Family and Miss Julie, but she might as well bring a toothbrush, put her name in the Secret Santa game, and heat up some leftovers. She's family). These are the behaviors that make him stand out, make him different, distinguish him from typical kids.

Well, every mom wants her child to have friends. Every mom wants her child to be happy, to do well in school, to live up to their potential. I want my child to enjoy learning, to be curious about others, to have a little best friend. I don't want him to be left out, teased, alone. That's natural enough.

So, here's the thing. This autism journey? Kind of like this life journey. I figure I have a couple of options. I can see it as tragic: a life of suffering followed by death. Or it can be heroic: the hero, in the face of adversity, defeats the dragon, shows courage and resilience, and brings his gift (and story) back to mankind. Maybe there are other options. Comedy? That's really the transcendence of tragedy: the hero blunders through tragedy into a happy ending. JBear has a great sense of humor (like his Dad), but I'd rather not have blundering. And life is not all about happy endings. We all know that from experience. Romantic? The hero rescues the beautiful victim. As JBear likes to say, "NoTHANKyou." No victims please. Too helpless by far.

So which lifeview do I want to teach my child? I want him to see himself as the hero: overcoming adversity with courage and resilience. Yep. Bingo. That's it. Autism is adversity. And everyone has adversity in their life. Yes, some more than others. But it's how we respond to adversity that makes the difference. I want my son to take the hero's journey and come out empowered.

And so I will take the Adversity Oath: Autism is not a tragedy. Autism is not suffering without meaning. Autism will be the path on the hero's journey.

Everyone, I'd like you to meet my son, Jack. Not JBear. It's Jack. He's my hero.

Where is Thumbkin, Where is Thumbkin

2009-08-20T07:09:00.002-04:00

We're playing. I have drawn a face on my thumb and my thumb's name is Finger. Hush, now. It's NOT confusing. JBear named it and, yes, he knows it's a thumb. Finger has been JBear's pal for about a year and a half. Used to be, JBear would talk to Finger all day. Our friend Miss Julie didn't hear JBear call me "Mom" for months because he only talked to Finger. Now Finger makes only occasional appearances, but JBear still talks to him especially when he's excited. I've often wondered what people think when JBear is calling out "Finger, it's a minivan!" or "Finger, it's an exit sign!"

So we're eating snack and playing.

JBear: Hi, Finger!
Me: Hello, JBear!
JBear: Hi, Finger!
Me: Yes, hello, I see you're eating!
JBear: Hi, Finger!
Me: Yes, we said that. Say something else.
JBear: Hi, Mr. Goldenlocks!

He cracks me up.

Beautiful Boy

2009-08-18T21:13:00.001-04:00

Baby, don't worry
'bout a thing
'Cause every little thing
gonna be alright --- Bob Marley, Three Little Birds

The [neural] hijacking occurs in an instant, triggering this [fight or flight] reaction crucial moments before the neocortex, the thinking brain, has had a chance to glimpse fully what is happening, let alone decide if it is a good idea. -- Daniel Goleman, Emotional Intelligence

The amygdala is the emotional center of the brain. It is often called the reptilian brain as it developed years before the so-called thinking brain, the neocortex. The emotional reaction of fight, flight, or freeze originates in the amygdala. Have you ever had a situation, like an argument with your spouse or a yelling match with another driver, in which you later think, Wow, I may have overreacted. What was that all about? That's neural hijacking. Your emotional center, the amygdala, kicked in before your neocortex even realized what was happening.

Story One. One afternoon, JBear and I went to the Target. I pushed JBear in a cart between the women's pajamas and activewear. Blue and pink fuzzy cotton legs hung high on one side of him, black yoga pants on the other. I leafed through the hangers then wandered around to the other side. Returning seconds later, I saw JBear looking anxiously around, head turning in all directions.

JBear: Mommy, I thought I losed you!

***
Story Two. JBear and Daddy took some honeydew melon and an oatmeal bar out on the front porch to enjoy the breezy, humid day. JBear clambered up on the sofa and they ate a snack together, watching cars and people jogging in the park. I shoveled birdseed into a pitcher and went out the back door, clucking to our squirrels and cardinals. When JBear came back in for a drink, he called Mommy! After no answer, he ran through the kitchen and breakfast room.
JBear: Daddy, Mommy's not here!
Daddy, teasing: What?! Where did she go?
JBear doesn't sense the humor. He starts crying. When I pull open the back door, JBear runs for me, hits me, then collapses at my feet sobbing. He thought I was gone.

***

Story Three. At Uncle Hans' house on vacation, we spent the day playing, ejecting teeny tiny toy hedgehogs from their teeny tiny house like teeny tiny rockets. JBear ate dinner with Cousin Hedgie. We bathed, brushed his teeth, and settled in. After JBear drifted off to sleep, I went downstairs for dinner and a little non-competitive wrestling with the cousins. As we were chasing each other around the sofa, I suddenly heard a cry. I ran up the stairs and into JBear's room. He was crying. Crying doesn't quite describe it. He was sobbing as if he was completely lost and had no hope of finding his way back. How long had he been crying? By the time I reached him, he was rolling around the floor, off the little mattress, heaving, runny nose all over his face, wailing. I felt terrible. Absolutely terrible.

I tell JBear that I wouldn't ever leave him. I tell him that I'm always near him. I tell him that if he ever wakes up and doesn't find me that I'm always in the house somewhere. I tell him he can come out of his room and find me.

All these explanations are very rational and fine, but JBear's fear is not rational. It comes from the emotional center. It comes from anxiety. He is in neural hijack.

How can I help him? How do I get him past the fear? Can I help him at all? All I can do is be there for him, speak softly to him, assure him, hold him, stay with him. But how I wish I could take this all-consuming anxiety away.

Close your eyes,
Have no fear,
The monster's gone, He's on the run
and your daddy's here,

Beautiful, Beautiful, beautiful,
Beautiful Boy

Before you go to sleep
Say a little prayer
Every day in every way
It's getting better and better

Beautiful, beautiful, beautiful
Beautiful Boy --- John Lennon, Beautiful Boy

Doting, Definition

2009-08-14T07:38:00.000-04:00

Yes, autism comes with social deficits, but I sure do learn a lot from JBear. Especially when it comes to compliments.

Compliment Rule Number 1: Take them as you get them.
JBear: Mommy, your eyes look like garage doors.
Me: Aww, thank you, sweetie!

Compliment Rule Number 2: Give them freely, even about things you dislike.
JBear: That dress is cute!
Me: Awww, you think so?

Compliment Rule Number 3: Get them when you need them.
JBear: Connor, I love you!
Me: Awww.
Connor: Thanks, JBear.
JBear: Mommy, I'm going to give Connor a big kiss.
Me: You are?
Connor: Okayyy... Thanks, buddy.
JBear: Mommy, am I so cute?
Connor: Oh, I am so getting played!
Me: Yes, you are so cute, JBear!

Oh, Barnacles!

2009-08-13T07:11:00.002-04:00

Note: Crabby patty = hamburger. Yes, we love Spongebob.

Me: Here's your crabby patty, JBear!
JBear: Daddy makes the best crabby patties!
Me: Yes, he does.
JBear: Did he make it on the grill?
Me: Just for you!
JBear, takes a bite: Daddy makes the best crabby patties!
Me: We do love them.
JBear, takes a second bite: It tastes like the grill.
Me: Mmm, doesn't it?
JBear, takes another bite: But sometimes Daddy makes yucky crabby patties.

Pause.

Me: Is this a yucky crabby patty?
JBear: Yes. (sigh) Sorry.

Sorry, Daddy. Bad day for the Krusty Krab.

Upon Leaving the Promised Land

2009-08-12T06:05:00.001-04:00

We've had a delicious week of swimming, swinging, singing, and Slurpees with aunt, uncle, and cousins. And now it's time to return home.

JBear, rubbing the sleep out of his eyes: What are we doing today?
Me: We're driving back home today, remember?
JBear sits up in bed, looks around his cousin's bedroom, then wails: I want a second bathroom!
And he begins to cry.
Me: Me, too, baby.

It's early morning. The pink sun fingers the sky. The dew wets our shoes. We have packed the car and positioned our snacks, books, and toys for the long trip home. JBear paces back and forth anxiously awaiting his last chance to see the garage open and close. Kisses and backwards hugs to everyone. Clap hands for the garage door to magically close. And open. And close. I waggle my bottom into a comfy position for the long drive. It takes the excitement of seeing the garage door a few minutes to wear off before JBear starts crying again.

Me: Eat your cereal, honey. You'll feel better after you eat breakfast.
JBear, sobbing: I'm never eating breakfast tomorrow!
Me: I know you're sad about leaving, but we have to go home to see your cats and your house.
JBear: I don't want to see the cats! I will step on they tails' tomorrow and slam all the doors!
Me: I know. It's hard to leave when we've had so much fun.
JBear, crying into his blankie: I want to live in they house. I want a garage door!
Me: I know, sweetie.

I feel helpless. I have just started an 8-hour drive with a sobbing child who has had no breakfast and whose totally lame house has no garage door! Do I pull over? Why didn't I give him breakfast first?

JBear: How 'bout this, Mommy? How 'bout we move next door?
Ah-ha! We have negotiating! He's coming back!
Me: Well, what if we look for a house with a garage door where you live?
No answer. Hmmm...
Me: Eat a little breakfast, sweetie.
JBear: No.
Me: I have a banana from Aunt Julie!
JBear: Huh? Aunt Julie?
Me: Yes, Aunt Julie gave you this banana.
JBear, snuffling: Okay.

Phew. Disaster averted. We have lift-off! Now where's my coffee? Aunt Julie?

Hold It, Mama

2009-08-08T21:16:00.001-04:00

JBear and I are on the road. We're on our way to visit the cousins and the excitement has been building for a month. We'd had a good time so far, two hours into our ride. We've done breakfast, snacks, books, snacks, a new singing puppy friend with a glowing heart, and more snacks. Now, we need to get some gas and make a pit stop at the bathroom.

JBear: Will there be an automat paper towel?
Me: No, gas stations aren't usually that fancy.

Hmmm, I've now established a link between scary automatic paper towel dispensers and fancy. Not sure how that will evolve.

Have you seen these dispensers? Wave your hand under the paper towel dispenser and a paper towel buzzes out. The problem: a mechanized, moving, buzzing thing. Forget it. JBear will run for the hills. They're loud; the paper comes out at you; they go off unexpectedly. Any machines that do this, like ATM machines or receipt printers, are terrifying for JBear. An automatic paper towel dispenser (hereinafter referred to as paperbuzzer or automat paper towel) was recently installed in our occupational therapist's building. JBear had no problems with that bathroom and loved to visit it UNTIL ... the dreaded paperbuzzer was installed. AND automated soap dispensers, too! However, we've made tentative progress in the last two weeks. We approached the paperbuzzer close enough to hear it last week. I mean, we actually made it in the door and watched it. After all, what are the chances a gas station will have one?

So we fill the car up and head in to the store. JBear is cautious as we approach the bathroom door, but I open it and peek in. No automatic paper towel!, I announce, relieved. It's a one-room affair - just a stall and sink and a blower. As we finish our necessaries, I stand up from the commode and WHOOOOSHHH! An automatic flush! THAT'S INCREDIBLY LOUD! JBear runs out the door. I grab my purse and run after him. And that, my friends, is the beginning of the Bathroom Nightmare. Ed. Note to all those detail-oriented readers: I carry hand sanitizer.

We talk about the loud Whoosh in the car and settle in for more snacks and more toys. A few more hours and we stop for lunch.

Me: We'll go pee-pee and wash our hands first, okay, JBear?
JBear: No. I do NOT need to go to the bathroom.

Hmmm. Well, I know it isn't a good time to bring on anything scary. He's hungry. He has to pee. And that's all he can handle. Anything scary on top of that and he will disintegrate. Maybe he'll be better equipped to handle it after lunch.

We have a great lunch. We feed each other french fries, try a milkshake, dance in our seats to some bouncy piped music, watch the reflections of the cars. Scanning JBear's face and body, checking for blood sugar levels, sensory processing, language expression, and emotional functionality, I reach the official diagnostic conclusion that he is now ready to enter the bathroom.

Me: Okay, JBear, you know what, I really need to go pee-pee.
JBear: No, I'm not going in the bathroom!

BZZZZZZ. Sorry, wrong diagnosis, Mom. Try again!

Me: How about this? How about I just peek in and make sure there's not an automatic paper towel?
JBear: No, no, no!

He's now squeezing past me in the booth, trying to run. My child is trying to get away from me.
Me: JBear, it's okay. We'll just peek in the door and leave, okay?

He runs away from the table, falls to the ground, and starts pounding the floor.

JBear: I'M NOT GOING IN!! I'M NOT GOING IN!!

I am now aware of all the other patrons staring at me. Not that I'm looking around, mind you. But those stares always seem to penetrate peripherally somehow.

I get down on the floor with him.

Me, whispering in his ear: It's okay, boobear, we won't go in, we won't go in.

I immediately had two thoughts. I feel terrible for bringing this on and I bet this looks like a tantrum.

First, I did feel terrible. I should have known better. Or I should have sensed the anxiety and let it drop immediately. I'm his mom, forheavensake. I want him to always trust me. What was I thinking?

And I imagine to everyone else this looked like a tantrum. I'm sure some old-fashioned disciplinarians in that restaurant would have loved to give me advice for enforcement. But at what cost? If I force him beyond what his body, his brain, his hearing, his vision, or his nervous system can endure simply to prove my authority, what will it cost him? He will overload. He will withdraw. He will block out the world by making garage door or ignition sounds. He will be too anxious to function. He won't trust me to help him. He won't join us in this world. I'll take social opprobrium anyday rather than risk that consequence.

So I drive to the next rest area and pull over to a grassy dog walk. Open both doors to block the view and ignore the trucker area across the walk. I stand behind JBear and lean him over while he calmly pees in the grass. A lady walks nearby, her pekingese sniffing the bushes, and she utters a surprised "Oh!" JBear and I get back in the car and drive on. And me? I hold it, Mama, I hold it. For the rest of the trip. 'Cause that's what we do for our kids.

On Death and Dying

2009-08-06T19:10:00.015-04:00

JBear: Where did Sarge go?

Me: He went to heaven.

JBear: What do you drive to heaven?

Me: You can't drive there. Angels take you up to heaven.

JBear: How long does it take to get there?

Our conversation about death and dying is always the same. JBear always asks about Sarge, my bestest friend's dog. Sarge had a special place in JBear's heart: his first real doggy friend. JBear loved to pound on Sarge's side and laugh as Sarge licked crumbs from his chair. Sarge gave him big, furry, wet-tounged love in return. When Sarge passed away, me and my bestest friend clung to each other's necks on the playground and sobbed. It was the first time JBear knew I was sad. It wasn't the first time he saw me crying, but it was the first time he realized I was crying and wanted to know why. I explained that Sarge had died and was in heaven, so we wouldn't see him anymore and I was sad about it. "Died and went to heaven" didn't mean much to him. It didn't mean anything. Such an abstract. Where is this place and how do you get there? And why can't people come back? So we have repeated the same question and answer sequence many times over the last few months.

Enter cousin magic. We visited JBear's cousins for a week. He adores his aunt, uncle, and cousins and I don't use the term lightly. They get him. I mean they really get him. They let him play with doors to his heart's content. They make all their stuffed animals talk. They have 124 rubber ducks. With NAMES! They love to swim. They have a toy minivan with an actual SLIDING door. They have a GARAGE for heaven's sake! That he can open and close! Many times! He adores them.

So, JBear and I are noshing noodles with the cousins when somehow he thinks of heaven, so he began the Sarge and heaven Q&A. When he asked how you get to heaven, Cousin Hedgie, playmate extraordinaire, piped up.

Hedgie: You go up to heaven in a golden escalator. No, escalators are too scary. It's a golden elevator that takes you all the way up to heaven.

Cousin Hedgie jumps up for markers and paper and returns to the table.

JBear: What are you drawing, Hedgie?
Hedgie: I can't tell you until I'm done. It's a surprise.
JBear: Are you done?
Hedgie: No.
JBear: Are you done?
Repeat ad nauseum.

When Hedgie is finished, she has drawn a beautiful, detailed picture of a golden elevator with doors and a window on its way to heaven. Angels accompany the passengers and animal angels fly around as well for any departing pets. We point out all the features and JBear studies it.

Hedgie: I had a teacher whose daughter was in the hospital and she was so sick she was going to die and she saw an angel and the angel was telling her to come.

I peek sideways at JBear to see how he receives this information. He does not appear to have heard it. But you never can tell with JBear. He often appears to ignore much of what's going on. A minute of silence. Then ...

JBear: Mommy, are you going to die?

The room falls silent. I had wondered if this question would ever come. In part, I am happy because he gets it, I think; he finally understands. Wow, a little cousin magic.

But immediately, I worry. Because the last thing this boy needs is more anxiety. His world of tilting floors, loud, unexpected sounds, hearing people talk but not processing the sound, and feeling completely overwhelmed by emotion already causes him to feel like a long-tailed cat in room full of rocking chairs (that's for you, Charm). I'm the first to admit I'm a little jumpy, but JBear ... he's raw nerves, baby, raw. And I completely understand why.

So, here I am stuck in a dilemma. Do I lie to him to avoid more anxiety? I mean, he's on vacation (a term I use very loosely) in a different place, different people, dealing with all the excitement and all the unexpectedness already. Or do I tell him the truth and whack him with a little more reality? Is there a right answer or like mama of all mama bloggers Jess would say, is there a rightest answer right now?

I focus in like a laser beam on his worried brown eyes.
Me: Not for a long, long time, baby.
JBear: When are you going to die?
Me: Not for a really, long time. When you're 100. You know how old you are now? 5 years old. So not until you're a HUNDRED years old. A loooonnnng time.
JBear: Mommy, I don't like you leaving.
Me: I'm not leaving, boobear.

Knock wood. Cross my fingers. Please God. Because the worst thing for JBear AND for me is imagining that. I absolutely cannot die until this child is fully grown, independent, and happy (and whatever other particulars I add along the way). Loss and separation are really difficult for any child. But JBear can't even bear when I leave for a meeting or shopping. When I walk out the door, there goes his buffer, his defender, his protector, his translator, his mindreader, his true north. I'm not the only mom who worries about death. But it's something moms of kids with autism and other disabilities worry about. A lot.

Maybe I didn't take the path of truth right then. Maybe it was the path of truthiness. But life with autism did not come with a map. So I'm going with my mommy GPS, the only aid to direction I have. And some cousin magic applied liberally.

Hugging the Rug

2009-08-01T07:02:00.000-04:00

JBear and I went a-calling the other day. We went to a new friends' house to play. She is a mom handling more than her share and doing it with grace and humor: two kids sliding around the spectrum and serious health problems of her own. She could choose to be fighting mad; she could choose to be depressed and isolated. Instead, there she is: with a smile that stretches from her to me, looking radiant, relaxed, her kids as brown as acorns, offering everyone snacks, games, and hugs. She is simply amazing.

JBear chattered constantly on the way over, rolling the kids' names around in his mouth. But when we arrived, he got down to business. Looking for a garage, exploring every door, checking out every room. I could see him hesitate as he came to a change in the flooring. At the hallway, the light carpet ended and the dark wood floor began. He stopped and gingerly reached his toe over, testing to see if there was a step or a drop or a rise. He cannot tell. He fishes his foot around on the surface, then puts his weight on it and finds it safe.

As he leaves the hall, he sees another door that's slightly ajar. He takes a peek in, then drops to his knees in terror. He is flat on the floor, hugging the rug, clutching it in terror. I drop beside him and put my hand on his back. Something scare you, baby? I whisper. Then I look towards the door and see the sharp descent of carpeted stairs down to the basement. For JBear, that peek down the stairs made him feel like the floor tilted and he was falling headfirst.

Vertigo. Vertigo on slides, on playgrounds, on ladders. Vertigo from looking downstairs and upstairs. Vertigo from looking between carpet and wood. Vertigo from looking in a tunnel. Exploring his environment is more important than discovering people. Because his floors are constantly tilting. Because his world spins suddenly. Because he can't trust his body to tell him what's safe. Who could possibly have energy left for people?

Yet there he goes. Forging ahead to the next room, still pushed on by curiousity. We head out to the back yard, where the bees are buzzing and the crows are cawing 'round the garden. Lolling squashes, tomatoes peeking from behind vines, cucumbers dazed by the sun. Our new friends are digging holes and replanting oak tree volunteers. They're throwing frisbees and watering gardens. Meanwhile, JBear is working hard to unlock a latch so he can open and close the garden gate while at the same time maneuvering the garden steps. He fumbles and stumbles. He gets a nice bruise on his shoulder and a scratch on his hand. But he hangs in there because he really wants it to work. Really, really wants it.

I felt the pangs and stayed with them. Oh, yes, I wish he could play with the new friends. Or dig up a garden or toss a frisbee. But then, my amazing grace friend whispered: He's figuring his world out. He's just not ready. So to you, my amazing grace friend, you are the bestest: someone who hears and listens, someone who sees and understands, someone whose shoulders are big enough for herself and for everyone else. In spite of all your own challenges or because of?

And JBear? We may be hugging the rug. But who could want more for their child than Courage and Curiosity. In spite of all his challenges or because of.

Baby, You Can Drive My Car - Part Two

2009-07-30T07:11:00.002-04:00

And the answer is ....

Yes, they are JBear's favorite cars - in order. For a boy who has zero interest in toy cars, he has developed a quest for knowledge about ... real cars. You see, it all started way back before he could talk when he invented his own sign language for "wheels turning." Seriously. Then we discovered the beauty of the car door. We had a slight bump in the road (seriously?) when the zip of a seatbelt being pulled became absolutely the worst sound ever. The seatbelts must be silenced at all costs! However, JBear has firmly established to all who know him that HE is in charge of seatbelts and may sometimes allow others to pull loudly or quietly, as he so chooses.

Then one magical day ... he saw it. The mecca known as the Minivan. Did you know a minivan has a sliding door! That can open with the push of a button! Now the world of vehicles is divided into two categories: cars and Minivans.

Miss Julie: Oh, look, there's Grace's car!
JBear: It's not a car, Miss Goolie. It's a MINIvan.

Now, he can only wonder at his parents' obvious ignorance in choosing a vehicle. Why anyone would NOT want the magic of a minivan is beyond him. Clearly, we have fallen short in the car department.

JBear, with a long sigh: I wish I had a minivan.
Me, with feeling: I wish you did, too, sweetie.

What will he be wishing for at 16? Please, don't take me there right now, mind.

Baby, You Can Drive My Car

2009-07-29T06:55:00.004-04:00

I present to you a list. See if you can guess what they have in common. Come back tomorrow for the answer.

Minivan (all kinds)
PT Cruiser
VW Bug
Convertibles (in general)
BMW convertibles (in particular)
Volvo Station Wagon
Jeep (the original)
Mini Coopers
Honda Element
Vans
Toyota Corolla
Audi
Toyota Camry
Ford Explorer
SUV
Bus (especially schoolbus)

Corralling a Hurricane

2009-07-27T11:33:00.004-04:00

JBear wanted to watch me pull up in the car.

His bottom lip trembled when I told him I was leaving for the hair salon, but he kept his composure. He got teary, but he held it together even though he hates me leaving him and even though this was the second day in a row I was going somewhere without him. After I left, he went to the playground with Daddy. He visited a train station. He chose his own drink at the convenience store. He had fun while Mommy was gone. But he was thinking the whole time about watching the car pull up and watching Mommy get out of the car when she returned.

Thing is, he didn't tell us.

Or, more precisely, he couldn't tell us.

I can imagine lots of reasons why. Maybe he was tired. Or angry. Or sad. Or didn't have time to tell me. Or just expected me to know. Or because the train he just saw was too close and too loud and scared the daylights out of him. Or because he watched me return one time and expected to do it again. Or because he missed me. Or because I'm the only person he feels safe venting with and he desperately needed to vent.

As it happens, I arrived back home before he did. Then he opened the door, juice bottle in one hand, expectations in the other. And then it hit. Gale force winds, category five, seek shelter immediately. All the emotions he had bottled up hit him like a hurricane and blew his roof off.

I WANT TO WATCH YOUR CAR, MOMMY! GET BACK IN THE CAR RIGHT NOW AND GO BACK TO THE HAIR SALON!

Hot tears streamed down his face. He threw his juice bottle and ran at me. Frantic, he ran back out the door and towards the steps. I chased after him to stop him from falling down the steps or running towards the street.

For the next forty-five minutes, I chased him, held him, rocked him, sang to him, listened to him. I gave him things to throw, permission to slam doors, words to yell, places to run. I kept him safe from hurting himself and I kept breakable objects out of the way. I wiped his nose and dried his tears. I tried to calm without repressing; tried to bring emotions down without denying them.

I was corralling a hurricane.

It wasn't about watching the car. It was about overload. There were only so many emotions he could handle and disappointment was merely the proverbial straw. I could have cut the storm short simply by getting back in my car and driving around the block. When the hurricane hit, I thought, Should I? Do I make this one thing happen? Or do I hold his hand through the hurricane and show him how to handle it? Is there ever a right answer? There are times when I think Now is not the right time. But this time, I thought He can handle this; I can help him.

Here's what I didn't think: He just wants his way. He's spoiled. He's manipulating me. He's behaving badly. He's throwing a temper tantrum.

This hurricane was not about behavior. This was not a temper tantrum. This was a child who spends all his energy just being in the world, just managing the daily assaults of sound, light, movement, balance, just trying to figure out what everyone is saying, and just dealing with people. It takes all his energy and more. It takes incredible courage. The least I can do is to be with him, to offer him compassion, to help him ride out the storm.

After it passed, we lay on the bed together. We pretended we were pillows. We tickled. We blew raspberries on each other. We giggled. When he was ready, we got up and sprayed shaving cream on the windows. This was my FEMA recovery effort. We needed to reconnect. That night at dinner, he gave me cucumber kisses, pizza kisses, sugar cookie kisses. No kisses have ever been sweeter.

I'll be there for the storms, the recovery, and the kisses. So when will the next hurricane blow in? Sometimes Mommy radar can forecast and divert it. But I'm holding on to this thought:

He handled it. He made it through the storm. He can do this.

Our Twelve,er, Twenty-Five Step Program

2009-07-25T08:52:00.004-04:00

You just haven't lived until everything you do requires twelve steps. Take, for instance, going to the supermarket.

Step 1: Get JBear undressed.
Step 2: Chase naked boy run around his bed.
Step 3: Get JBear dressed.
Step 4: Get myself dressed. Find sexy shoes. Ah, makes it all worth it.
Step 5: Choose an animal friend for the ride.
Step 6: Out the door, quick.
Step 7: Give JBear the key fob to unlock the car.
Step 8: JBear opens front door and puts his imaginary watch into the glove compartment. Wait! Where'd our animal friend go?

Step 9: Help JBear buckle his animal friend in the front seat.
Step 10: Let JBear make just the right kind of zip sound with the seatbelt. And please, do not help, Mom.

Step 11: JBear closes the front door.
Step 12: JBear opens the back door and climbs in.

Okay, so twelve steps was optimistic.

Step 13: Buckle in JBear. Give us a kiss. Aw, that really makes it all worth it!
Step 14: Buckle myself in, making sure to pull the seatbelt quietly so it won't make a surprising zip sound.

Step 15: Make sure all is quiet so we can hear the car starting.
Step 16: Proceed to supermarket.
Step 17: Check for minivans, mini Coopers, convertibles, big vans, PT Cruisers, and VW bugs along the way. Assign animal friends and destinations to each car. Try, try to remember, Mom, where everyone is going and in which car!

Step 18: Arrive supermarket. Get JBear out of the car.
Step 19: Help JBear up in the front seat to unbuckle the animal friend.
Step 20: Close the doors. Don't push the button, Mom! Let JBear lock the car.
Step 21: Wait at the supermarket doors to watch the doors open and close.
Step 22: Fish around in handbag for a lollipop for JBear.
Step 23: Begin shopping.
Step 24: Everything in between and check out.
Step 25: Go to car and repeat. Whew.

And that's just the supermarket. My optimal twelve-step grocery program would include a pedicure, frappucino, shoe-shopping, and a food delivery van. How about this: I find a supermarket next to a stuffed animal store, next to shoe store, next to a coffee shop, next to a minivan dealership. Ah, a 12-STORE program! Now that's a deal!

I Am NOT Laughing Hysterically

2009-07-23T07:35:00.001-04:00

I'm making lunch, moving between the fridge, the stove, and the counter. JBear passes through the kitchen on his way to the pantry. I hear rustling in the lollipop bag and silence.

Me: What are you dooo-ing, JBear?
JBear: I am NOT getting a lollipop.

Sometimes, the hardest part of my job is keeping a straight face.

Books in Literal Land

2009-07-21T08:48:00.002-04:00

JBear and I are sitting in our rocking chair, snuggled up in our pj's, settling in for the night. Squeezed in on one side is Heavy Woof. Blankie's on our lap and we're ready to read our books. We have the latest adventure of Henry and Mudge in which the whole family has gathered in the basement to build a castle out of boxes.

Me: Henry runs upstairs to get his castle book. Henry's dad runs upstairs to get some glue. Henry's mom runs upstairs to get pencils. Mudge runs upstairs to get a snack. "How did we all end up here?" asks Henry's mom.

JBear: The stairs!

With Your Best Shot - Part Three

2009-07-19T08:00:00.002-04:00

At the end of the day, I was slicing tomatoes, sauteeing chicken, and boiling some pasta. JBear was tired, worn out from the doctor's visit, and had already played out the shots with the Other Woof. Hungry and tired, he ran back and forth in the kitchen, out of ideas and energy.

JBear: Hey, donuts, do you like your bunk bed?

Me: Yes, we like sleeping way up high on the counter.

JBear: Donuts, are you worried about being up high?

Me: It's a little scary, but I can stay way back.

JBear: Hey, donuts, do you like your bunk bed?

Me: Wait a minute, you already asked me that.

JBear: Are you worried about being up high?

He was stuck. I tried changing up the conversation, but he was having none of it. I could have tried any number of options. I was thinking about the shots, about the verbal repetition, about the autism ... you know, the neverending quest for answers. So, maybe telling him a story about his birth and start casting him in the role of a hero who overcomes challenges. He loves stories; he loves hearing about when he was a baby; this will be great! I scooted on the floor and got right in front of him.

Me: JBear, you know what?

He's listening, head down, looking at the floor, standing still for a minute. I continue, very slowly and softly.

Me: When you were first born and you were in the hospital, you were very sick. Usually when babies are born in the hospital, the mommies and daddies can take them home right away. But we couldn't take you home because you were sick. So you had to stay in the hospital. But you wanted to come home so much and wanted to get better so much that you fought very hard; you worked very hard until you got all better. And then we brought you home! That's because you're such a hard worker and so brave that you do things even when you're scared; just like the shots today!

JBear: Hey, donuts, do you like your bunk bed?

Did he hear me? At all? Was he thinking the donuts monologue while I was going "Wah, wah, wah-wah-wah" in the background? Did he process it? Was it too scary? Too much? Is he just too tired? Will I ever be able to tell him meaningful stories about his life? Will anything get through right now?

When we first started therapy, I had an image of upward and forward progress. One of those scale graphs that look like a mountain side inching closer and closer to the top. I thought once we reach a certain level, then we'll be past sensory problems or past getting stuck. But it's not like that. Our graph is more like a roller coaster. Up, down, forward, back. It's not a straight line. It's not exactly a circle, but what is it?

I'm lucky. Really, I am. JBear usually stays connected with me. Even stuck, he usually wants my participation. He can hear me when he hears no one else.

Still ... is this what autism will be in our life? A veil that lifts and falls?

With Your Best Shot - Part Two

2009-07-17T08:25:00.001-04:00

After the shots, a long snack, and a lollipop, we played doctor with the Other Woof. JBear sat down with his doctor's kit and passed up otoscope, stethoscope, and bandaids and went straight for the syringe. He gave the dog shot after shot while Woof howled in pain and JBear laughed hysterically. This was the first time he ever used the doctor's kit with real meaning. Nice power play, son.

That night, the thunderclouds began gathering in the sky. We were getting undressed for his bath when he started slowly dissolving into a stream of nonstop worries and tearful eyes.
JBear: Mommy, I don't want any shots ever, ever again. I don't want to get in the bath. It will hurt my shots. I just want to go to bed. I'm worried someone will come and give me shots. I'm never, ever getting a shot again. Never, never again!

I made comforting sounds and reassurances. He started getting feverish and the worries continued. It took him a long time to let go and fall asleep.

The morning air was fresh and the squirrels were searching the wet grass for scattered sunflower seeds. JBear turned over in his sleep and started giggling in his dreams. I hadn't heard that in years! It has to be the best sound ever. So I had to know as soon as he woke up.

Me: What were you laughing at in your dream, sweetie?
JBear, giggling hysterically: Hamburger poop!

Well, he is a boy.

With Your Best Shot - Part One

2009-07-15T09:00:00.002-04:00

So we had to start out bright and early this morning after a thunder kaboomer of a night. Water puddled everywhere and petals lay at the foot of our plants. We were on our way to JBear's 5-year-old checkup complete with shots. Before this year, JBear wasn't aware enough to know shots were coming. And when he did get one, he never cried. Even as a baby. The nurses were always so impressed, as if this was an accomplishment. It was amazing, but not in a good way. JBear simply shut down.

So as I was pulling his socks up and putting on his shoes, I took a deep breath.
Me: So at the doctor's this morning, they're going to give you a shot. And it will hurt, but not for very long and then it will be over. Okay, JBear?
JBear: Ugga likes shots.

Notice the emotional burden-shifting. You remember from our animal friend discussion that Heavy Woof is JBear's favorite, but Ugga is his alter ego. I'm starting to feel like the Three Faces of Eve here. Ugga the dog deals with the negative emotions that are too much for JBear. So Ugga often breaks his mommy when JBear is angry with me or spills his growing food when JBear doesn't want to eat. Now Ugga was taking over the shots.

But as we approached the doctor's office, JBear started worrying out loud about the shots.
JBear: Will it hurt for just a little bit?
Me: Just a minute and then it will be over.
JBear: Will it hurt a lot?
Me: Yes but it will be over quickly.

By the time the nurse came in to administer the shots, JBear was letting everyone know about it.
JBear: I DON'T LIKE SHOTS!
Nurse: I know, shots are not fun.
JBear: I don't want ANY shots!

And, Lordamighty, there are three of them. The first two go in and JBear looks at me with pained eyes.
JBear: Don't do it, don't do it!
Nurse: Now this one is going to sting a little.
(Translation: This one will hurt like hell. And it does.)
JBear: DON'T EVER GIVE ME A SHOT AGAIN!
He grabs onto my neck, leans in, and his face crumples into tears. I hang onto him and tell him it's okay to cry; those shots really hurt.

This situation is so bittersweet. All these years, I knew those shots were hurting him. He could never express it; it was too overwhelming. Today, he could identify his feelings and tell other people exactly what he thought. And he cried. Thank God, he can cry and let it out. When those shots hurt him before, he was stuck alone inside with it. Now he's not. I absolutely hate that he's hurting but I love that he can tell me.

But, oh, those tears. Just like the rain. We need it desperately. But the beautiful pink petals are lying at the foot of the lilies. And the stalks stand there bare.

More from Literal Land

2009-07-14T08:02:00.000-04:00

More amusing bon-mots:

At a play tea party with animal friends:
Miss Julie: Did you finish your cup, JBear?
JBear: No, I just finished my tea, Miss Julie.

Mr. Darren: I'm going to sweep the porch down now.
JBear: (for the next FOUR weeks) Is the porch down yet? Is it down yet?

The Hardest Part

2009-07-12T09:01:00.000-04:00

My Top Three Most Difficult Things About Autism
Raising a child with autism is hard. Really hard. I'm not even talking about the fears about the future and other big-picture worries, just the day-to-day living. So what is it that makes it so hard?

Perchance to Sleep
Many children with autism have sleep problems. It's hard to fall asleep so they need you right there with them. Or it's hard to stay asleep so they wake up many times a night and sometimes stay awake for two to three hours. Or it's hard to sleep for very long so they wake up early. I mean middle-of-the-night, technically-it-qualifies-as-morning, just-throw-the-coffee-in-my-face early. We've had every variation of snooze difficulties. I've been sleep-deprived for at least four years. Though I got used to doing without sleep, it sure didn't make it easy to function during the day either for me or for JBear. Imagine all the difficulties of autism AND you're so tired you could cry. (I mean JBear, not me. Okay, sometimes me.) So sleep deprival is one of the hardest day-to-day challenges.

Great Expectations
Everyone has expectations about their child, their life, their family. Maybe not realistic, but there they are. I don't know if it's all women, but certainly I had dreams about the child I'd have one day. And my husband, well, his dreams about a child skipped right over infancy and toddlerhood straight to playing catch. We've had to adjust our expectations from day one when JBear had to be in the NICU instead of in our hospital room. To learning crawling and walking with physical therapy instead of on his own. To being so overwhelmed by light, noise, and movement that he couldn't interact with people or other children. To unusual interests in household objects instead of playing with toys. We had a big adjustment and dealt with grief and the loss of our old expectations. Which isn't to say we don't love our boy more than life itself. Like most parents, we think he's the cutest, smartest, funniest child ever. But he's having to overcome incredible challenges. And we come up against them every day.

The fact that we're not on the same track as everyone else (baby playgroups, gymboree, preschool, playdates) has made it difficult for us, but friends and family have expectations as well. So the choices we make are sometimes difficult for others to understand. Especially when they don't know the details of the situation but sometimes even when they do and we just can't meet those expectations.

Then there are the expectations of the general public. People expect certain behavior from children. Everything from being quiet and happy, to answering strangers' questions, responding in specific ways, and being interested in certain things ... on and on. And people generally respond to what they perceive as a child misbehaving with harsh looks or remarks to the parent. I'm guilty of it, too. In my distant past, one of my pet peeves was children running in a restaurant. I didn't blame the children, but I had cold stares for the parents in hopes they would feel my disapproval. Now I'm truly embarrassed because I understand what may cause different kinds of behavior in public. It's true, JBear's not a runner in a restaurant. But we have our own things. Understand that we didn't go out to restaurants for years because they were just too noisy, too bright, or too busy and we knew it wasn't best for JBear (also hard for us, we enjoy restaurants; also hard for our friend who didn't know why). But recently, we've made more and more forays. Most of the time, JBear completely enjoys the experience and so does everyone around us. One trip, though, he had a complete breakdown because he was so hungry and so tired and the restaurant was noisy, crowded, and had a completely fascinating door. Most of the time, I try to prepare for all eventualities: bringing our own food and animal friend, going to familiar places, going very early. But sometimes we just can't prepare for everything: a crowd, an unexpected surprise, an automatic paper towel dispenser in the bathroom. What would be nice is what I didn't do before autism: for people to lose their judgments, loosen up their expectations, and offer help or at least support instead of glares. But, at the same time, I have to lose my judgments and expectations towards people who don't know any better. Gulp. I think I need to go shoe-shopping.

At any rate, expectations in general are really difficult to deal with every day.

Autism Doesn't Take a Day Off
Children with autism need undivided attention all the time. I am the primary source of comfort, shield of defense, and translator of needs for my child. Without me, JBear feels desperately lost. He can actually tell me now, "It's just easier when you're here, Mommy." I am thrilled that he can use me to function, play, and recover. But autism doesn't take a day off, a sick day, or a vacation. In fact, vacations are even MORE work because it's a different environment with different schedules and different people. At home or on vacation, I constantly have to assess, provide, comfort, play, translate, deflect - I have to be on all the time. While it's important and rewarding work, it's also exhausting. So, the day-to-day, must-keep-moving, groundhog-dayishness of it is really difficult, too.

More
Okay, I'm going to stop myself at three. Any more and I'll be completely exhausted just reading it! But I think it's important for everyone to understand the challenges parents face while raising a child with autism. Many people are much more aware of the word "autism" these days, but don't know exactly what it means or why it's difficult. So, I'm curious: what do you think is the hardest part?

Three Common Mistakes with Autism Play

2009-07-07T10:14:00.017-04:00

So while I've been gone, I've done some playing and some working. Like other Floortime moms, when I'm not doing Floortime with my child, I'm thinking about Floortime. And watching others do Floortime.

Wait, wait! I've just said Floortime four times fast and I don't want you to fall asleep on your keyboard. So, if you don't do Floortime or if your child doesn't have autism, please substitute "playing with your child" whenever you read Floortime. I promise, it will help, even if it's not grammatically correct.

Now, I'm no expert ... BUT I have noticed a few things and I wanted to pass them along in case they might help you. So to my other "playing with your child" friends, here's a secret: Floortime helps you play with all kids. You wouldn't believe how much other kids like me now that I know how to play. And I assure you, I did NOT know how to play before Floortime. And the great thing about playing with kids? It connects you in a way that is emotionally satisfying for both of you. It helps them with self-confidence, recovery from upsets, all sorts of good things.

But first, I have to say a few words about Floortime (just a few more, I promise!). Floortime is a special kind of play in which the adult gives undivided attention to the child and joins the child in his world and enjoys his interests. There are three areas in which kids with autism have difficulty: Reciprocity (which is mutual sharing, actions, influence, and symmetrical exchange of emotions), Initiating and Sustaining a Conversation, and Restricted Thinking (like problems with pretend play, social problem-solving, or inititiating ideas). So, while you're doing Floortime, your goal is to help your child connect with people, communicate in a back-and-forth manner for longer interactions, and expand their thinking. But again, this kind of play helps with all kids.

When I first started doing Floortime, though, this kind of background and theory got stuck in my head and I went in with too many grand ideas. Stuck? No, I didn't get stuck - I was mired! How in the world was I ever going to play with my child? Then, of course, I started worrying about him and I got even more stuck.

Common Mistake #1: Thinking Too Much

Well, of course, you are! You're worrying about your child constantly. When you start trying to help and it's really, really hard to even connect with your child, you worry even more. That's natural. So now someone's asking you to drop it and have fun? Right. So, the first thing you also need to add to your busy schedule is some way to relax. Meditation, yoga, hot bath, friends, shoe shopping. Whatever allows you to stop ruminating for a little while and start relaxing. I heard this advice and I skipped it. It's always been hard for me to prioritize me. Even more so when my child needed me so desperately. But I'm much better at playing when I've had some me time. Much better. So don't skip this step. It's just as important. And you should see my shoes!

Then when you go to play, don't come in with lots of theories or ideas about what step is your child at now or what skill should I be teaching or how is he ever going to do x? Leave all that for later and think about one thing: how can you get your child to laugh? Laughing is the best way to connect. Start with simple games: peek-a-boo, hide-and-seek, hide the toy (which, by the way are all games about connection), funny noises, bubbles. Find out what makes your child laugh and use it. Is it making the baby doll pee? Play pee-pee games. Is it a whoopee cushion? Making the stuffed dog spit? Can you tell body humor is a big hit in our house? It will be different for your child, but do a little silly research on your child. Find his funny bone.

Common Mistake #2: Thinking About the Next Game

Most people get so worried about what to do when they're playing that they are constantly thinking about the next thing to play. Then they aren't paying attention to what's happening now. Is your child overwhelmed? Are you going too fast? Does he love what you're doing and doesn't want you to stop? Stay with him. Just watch him if you're not sure what you're doing is working. Slow down for a minute. If you think it's not working, then watch him for a minute to see what he is doing. Then join him in it. Whatever game he's playing, try to make it a game of connection. Is he running in circles? Make an obstacle course and run with him. Is he opening doors? Play a peek-a-boo game. But try to go with the flow and just be with him. You'll find something even better to play together.

Common Mistake #3: Talking Too Much, Too Fast

If I could ask everyone to do one thing, just one thing, for kids with autism, it would be this: Please allow a long, long, LONG time for him to process your sentence or question and to respond. Usually when we're talking to someone, we wait about two seconds for a response before we assume that they either didn't understand the question or they're ignoring us. Waiting five seconds would seem like an eternity to us. So we tend to repeat the question, ask another question, say their name, or answer our own question. But kids with autism often have slower processing. They hear you; it just takes much longer to process what you've said and to figure out what they want to say in response. It may take 15 seconds; it may take 30 seconds. But when you're talking to your child, slow down and wait. Give them the time they need to process it all. And let them get a response in. It takes an enormous amount of patience.

Example: I told JBear I was leaving the house to go to a meeting. He cocked his head to the side and stood silent. 5 seconds. 15 seconds. 30 seconds. To anyone else, it would have looked like he checked out. Was he bored or daydreaming? No. He was processing the information AND his emotions. Finally, he said, "It's okay, Mommy, I won't be sad." He just needed to think it through.

Finally, remember, it's about having fun. It's really difficult with all our adult worries to let loose and be silly. But reach way back, before it was about being cool or grown-up, and find a way to be goofy. Yes, autism is a hard road. But I've had more fun since I've learned how to play with my child than I ever would have without autism. And I'd love to spread some of that kind of fun around. So, touch here for a little silly lotion and go have some fun.

Emotional Rescue

2009-06-13T16:32:00.006-04:00

There are a lot of scary things about boo-boos. First, boo-boos happen suddenly. It's a painful surprise. Surprises are hard enough alone and suddenly there's a surprise with a stinger! And boo-boo's hurt. Sometimes it's a big hurt; sometimes a little one. Then, the way the boo-boo happens is scary: the falling down part, the part where the finger got stuck. Scary. On top of it all, children with autism often don't have a brake on their emotions. So when JBear feels a strong emotion, like fear or surprise, the speedometer goes from zero to 100 mph in 2 seconds. And zoom, the big feeling explodes out of the gate. That's a lot: several emotions going off like fireworks all at once and an injury, too! Emotional jackpot.

Over the years, I've tried several ways to help JBear with his boo-boos. I used to scoop him up and say, Oh no, are you okay, where's the boo-boo? But that was too much trauma drama and just made it worse. More emotions, Mom, right now? Really?? One method that was successful for a while was boo-boo duck, a frozen, fuzzy boo-boo buddy. It was a good distraction for a while: "Quick, go get boo-boo duck!" But then JBear started taking out all his anger on boo-boo duck and on the freezer door and it wasn't helping him learn to manage anything.

As often happens with Floortime, I finally figured out how my feelings, though valid, aren't helping. JBear had medical problems when he was first born and he's always had challenges with his body. Both those things made me want to do anything to prevent accidents and to soothe the aftermath. Most parents want their child not to hurt or cry or even get mad. You just want the feelings to go away. Perfectly natural, but not the best thing for him. There seems to be a natural reaction in my house when JBear flings a block in frustration because he can't stack it: he always hears "Don't get mad; it's okay." Well, why can't he get mad? It's freakin' frustrating! And even if I'm trying to get his emotions to go away, he doesn't stop feeling them. That just makes him repress them or feel like his feelings aren't right or valid. Then he's left to deal with the emotions by himself. And I knew the emotions didn't just disappear because they would leak out eventually, somewhere, somehow.

Now we've hit on magic - a Floortime tactic that lets him experience the feelings without letting them overwhelm him. When the boo-boo or any other scary thing happens, I comfort him and let him cry without saying "It's just a little boo-boo" or "It's all better." Instead, I'll say something like "That really hurt and it really scared you." He can cry, express his fear and anger, without me working doubletime trying to stop them. Then, and this is the magic part, we'll recreate the event. Over and over again.

Two examples. JBear was on an indoor swing with a friend of mine. He told the friend that he was a little worried that he would bonk into the wall because a different friend had done that once. The friend assured him he wouldn't bonk and, unfortunately, proceeded to bonk him into the wall. It wasn't the injury - that was minor - it was the fear. After JBear clung to my neck and cried for five minutes, we recreated it. First, I held onto the swing and steered and said, "You were just going around in the swing like this and all of a sudden, BONK!" Then the friend reenacted it; then JBear took a turn. We did it over and over until JBear was ready to move on. By the end, he was adding music to it and laughing about it.

Second example: JBear and I tried to ride a train. Trains are terribly scary: dark, loud, moving, tunnels. The attempt did not go well. In fact, it was a disaster. I felt like terrible mom of the year. JBear was scared to death. So, after we disembarked and all the way home and all afternoon and all through dinner and even through bath, we reenacted the train ride. In great detail. First, we got on and you said you didn't want to go. And you got really scared. Then there was the whistle PEEEEP. Then the first tunnel was so dark I couldn't see anything even my hands. Then we put our hands over our ears and went through the second tunnel with the train going SCREEEEEEECHHHH and it really hurt your ears. So we yelled really loudly "YELLLL!" and you know what? I am NEVER going on that train again! It was TOOO SCARY! We told the story over and over and over again.

And you know what? It really helped. Maybe we're hardwired to try to get a baby or little kid to stop crying. It seems like a natural reaction. It's a hard thing to have to do - to allow JBear to feel and express all his emotions - even the nasty ones. But that doesn't mean he has to deal with it by himself. Set the stage. Curtain up. Start the story. My biggest fan is waiting.

You're Bugging Me!

2009-06-02T14:46:00.007-04:00

He's bugging me! Isn't that great!

JBear and I were lying on the bed together, enjoying the coolness of the sheets. He sucked on a lollipop while he waited for me to finish an email. He put his bare feet on my arms and crawled them up to the laptop screen. Bare feet on arm, I'd mistype something. Bare feet on screen, I couldn't read what I typed. Either way, he got me. Me: JBear, just one more second while I finish this email. He got an impish grin on his face and a mischievous look in his eye. He let a second go by, then his feet go crawling up my arm onto the screen again. I'd move his feet aside and say, "Just one more second. I'm almost finished." And again ... feet on the arms up to the screen. This time, I could not resist. I closed the laptop and fake screamed "You are bugging me!" I fell on top of him. "You are really bugging me!" After removing the lollipop from my hair, we had a great wrestling giggle-fest.

I was delighted! He was being an imp! He really wanted my attention and was using a very playful way to get it. Play is a great way for us to connect and a wrestling giggle-fest is the best. He gets lots of connection, face to face, firm physical contact, and plenty of laughter. No tickling is the rule (that can be unwanted and kind of coercive) and letting him win (eventually) is the unspoken rule. He absolutely loves being able to escape me - he feels so proud of getting away. It's not easy for him to figure out how to use his body or his strength. And we both get something out of this kind of game: I get to hug and kiss all over him, while indulging in a little dramatic acting. He gets connection, hugs, and confidence.

I know what you're saying: I may not be celebrating JBear bugging me when he's still doing it in ten years. But, I'll let you in on a secret: I really will love it. That's one perspective being a parent of a child with autism has brought. All those things kids typically do that drive parents batty? I take none of it for granted. Bring it on, you little scamp!

Catch Their Underwears

2009-05-23T11:21:00.006-04:00

I come from a singing family. My mom sings, my grandmother sings, my sisters sing, my aunts sing. We sing. In the morning, all day, we sing. We aren't a tuneful bunch, but it doesn't matter because it really makes us happy to sing. And I never knew what a gift that would be for JBear. It has been a way to connect, to make him laugh, to bond with others, and - added bonus - to motivate him. I have sung to him since he was a baby. I have a song for every subject imaginable. Waking up, washing hands, getting dressed, hot dogs, watermelon, oranges, bologna (you know the one), coffee (not for him!), minivans, doors, cats, dogs, rain, sunshine, the moon, and on and on. If I don't know one, I make it up. Ad jingles, popular songs, nursery songs, everything. He's always responded to songs.

When JBear was a newborn and still in the NICU, I must have sung the entire soundtrack from O Brother Where Art Thou a million times: As I Went Down in the River to Pray, Go to Sleep, Little Baby. It started out as a way to connect with him through wires, monitors, beeps, a limited time to touch him, and a very heartwrenching situation. Later when he was a baby and we went somewhere in the car, he was terrified. I thought he hated the car seat. Now I can understand how frightening the position, the sounds, and not being able to see me was. At the time, it was just instinct to sing to him. I must have sang Old McDonald a million times with unexpected animals and funny noises just to calm him down. The radio didn't work; just my voice. He still asks for a song "with your mouth, Mommy" to tell me to sing.

The boy now has an amazing repertoire. He knows all the words: from Take Me Home, Country Roads to Guantanamera to Jingle Bell Rock to City of New Orleans to When the Stars Go Blue.

I can remember as a child listening to my mom sing Kentucky Babe , If I Had a Hammer, I'm Not Lisa, Brand New Key, and every single time the national anthem played before a baseball game. I still do that, too. I also remember my dad singing Alice's Restaurant and You Are My Sunshine, so a little bit of Irish tenor helped. But it was my mom who inspired the habit.

JBear's latest favorite is Teddy Bears' Picnic, which he learned from my mom. Magical Nana came to visit last week and brought Giorgio, her teddy bear. Every morning, Magical Nana would sing out "Yoo-hoooo" when JBear woke up and he would go running to her bed to cuddle, sing, and dance with Giorgio. I loved hearing him sing "Watch them, catch their underwears," his own interpretation of the words. They sang When the Red, Red Robin, Pony Boy, and old fave the Orange Blossoms song.

JBear continues to connect to people through songs. Last year at a restaurant, JBear, just turned 4, was intensely focused on the doors in an attempt to regulate himself to the noise and busyness. He astonished our server by suddenly singing out, "Mommy, is that True Colors?" Daddy and JBear have their own special songs: This Place is Empty, Save it for a Rainy Day, Buckets of Rain, Little Red Caboose, and Hallelujah. After one afternoon with Grandmom, JBear was singing Sur le Pont d'Avignon for weeks before I figured out what it was. He finally connected at a playdate with a little friend when we all sang Pig's Perfect Pizza together. JBear's always amazed when a stranger sings a song he knows. "Mommy, she knows the Mickey song!" I'm pretty sure he thinks they are his own private songs.

Songs can lift him up, calm him down, bring him out. And for me, too. So, thanks, Mom ... for all the songs. And thanks to all the singers in my life. We aren't in it for the fame or the groupies. We want one special singer to join us on stage. Oh, and for the rock star shoes. And maybe the green M&M's, too.

You Just Call Out My Name

2009-05-06T14:30:00.013-04:00

JBear has some much beloved animal friends. Heavy Dog has been a faithful friend for a long time. He's ... heavy. As in, I added extra poly beads in his tummy to make him really heavy (heavy lifting is a great sensory organizer and for building 'muskles'). Heavy Dog likes to be bonked on the head and to be thrown around. Purring Kitty is also a favorite, even though we long gave up on replacing batteries. Pooping Dog has broadened his range of activities since we hid the poop (which is also the food. Disgusting, but not my idea. It's a Barbie dog. I swear.). Panting Dog, Rocking Dog, and Awwing Dog have each had their moment in the sun, but now wait patiently on the mantle for their next turn. Baby Meow has been a new favorite since we discovered that, with a special superhero lotion, he becomes SuperMeow and flies around the room.

But Bath Baby was the first doll JBear agreed to play with. Babies had always been a noise nightmare; maybe that's why he's never liked dolls. Originally, Bath Baby was only good for throwing, but now he's restricted to the bath since he has a peeing problem. He drinks; he pees. He just can't stop peeing. He doesn't have a drinking problem; he has a peeing problem. Sometimes JBear asks to bring Bath Baby as his friend in the car. But Bath Baby must always say no. "Why not?," asks JBear. "Because I pee everywhere." It leads to some hilarious negotiations. Purple Baby was our second baby doll, after Bath Baby proved to be such a hit. Purple Baby gets a lot of boo-boos. Sounds like he's covered in bruises, which he is, but most of those aren't purple. He wears purple pj's.

But Purple Baby has recently been supplanted by Turning Head Baby. Yes, the celebrated Turning Head Baby of our first successful negotiation. Turning Head Baby babbles and, well, turns his head and waves his arms. But Turning Head Baby has another claim to fame. He was the first thing JBear saw in the store and wanted. I mean WANTED. Over the years, JBear has never been able to tell me what he wanted for his birthday. Or even if he wanted something he saw in the store. He is so challenged with his visual spatial problems that I could go gift shopping with him and slip the gift in the cart without him ever noticing. Of all the toy aisles we would go down, I'd often show him something or he'd recognize a character, but I was often mystified as to what he liked. And toys have always been a problem. JBear never played with toys. From the time he was in therapy, we asked OTs and PTs alike, why doesn't he play with toys? Children with autism have a difficult time identifying their feelings, connecting their wants to an intention, their feelings to an action. So, we've played a lot of Floortime games, using words to describe what Mommy likes, what Daddy really doesn't like, what JBear wants, what Heavy Dog feels. We encourage a lot of circles of communication, verbal and nonverbal. We play out favorites and things we really don't want at all. We play games of negotiation for things we really, really want and things we just can't have right now.

So, we're wheeling down the toy aisle past pretty little baby dolls all in a row. And they're motion activated. So every time someone walks in front of them, they begin a chorus of oohs and da-mamas, arms waving and heads turning side to side. JBear was fascinated. So we watched them for a few minutes, then moved on to the next aisle. But JBear would not be dissuaded.

J: Mommy, I want to see the baby dolls.
Me: So, you really like those baby dolls?
J: Mommy, I want to see the baby dolls NOW.
Me: I just need to look at a few more things.
J: Mommy, I want to see the baby dolls NOW!

Some other heads are starting to turn in the store and it's not the dolls. So we go back to see the baby dolls.

J: Mommy, I want to take it in the cart. I LOVE that baby doll.

Are you kidding? Of COURSE, I got it for him. And Turning Head Baby has taken his place among our other friends. You can call me Turning Head; you can call me Panting Dog; you can call me Stands with Shoes. Just call me.

Just Say No to Saying No

2009-04-30T22:03:00.007-04:00

Okay, so that was the deal. Why is negotiating important for kids to learn? First, when your child really, really wants something, he's engaged and that's the first step. For a child with autism (and many teenagers), becoming engaged is very difficult. Whenever we can hook their desire into more relating and communicating, we keep them engaged. And for all children, when they learn to keep talking through strong feelings, they learn to regulate. They learn that they are not their emotions. They may feel angry, but they won't get carried away by anger, unable to control or communicate. They won't get overwhelmed in the midst of strong emotions, which means they'll keep their attention on you or the task. Think of all the tasks we have to do while undergoing high stress: taking a test, arguing with a spouse, getting a toy back on the playground, demanding a raise. So even though your child really, really wants that cookie, if we can keep him talking through that strong feeling, he's learning to manage his emotions. After that, he's on his way to the world of ideas. While he's negotiating for that cookie, he's learning how to express ideas and wishes, how to connect ideas, how to think logically, and how to solve problems. If we just say no to the cookie, it's over. End of communication. But if we continue the conversation, we continue the idea exchange between us.

In his book Outliers, Malcom Gladwell talks about the advantage of "social savvy" that some kids learn from their parents. Gladwell calls the parenting style "concerted cultivation," in which the parent engages in lots of give-and-take reasoning with their child. The advantage that negotiating gives to children is a sense of empowerment that allows them to effectively deal with authority. Whereas children who were raised with the more authoritative "no" were often intimidated by authority figures and wouldn't speak up for their own needs, children who had this social savvy didn't feel intimidated and negotiated for what they wanted or needed, like asking a teacher for more help or asking a doctor a question. This "right to speak up" gives children a social advantage.

So, enter my negotiator. On the verge of tears, JBear was able to regulate his emotions and start a deal with Turning Head Baby. And many deals since then, too. Today in the store:
Me: I need to look for some new pants for you.
J: How about this, Mommy? Why don't we just go out here and go home?
Raise your hand if you think I said no.

Oh, yes, and I haven't forgotten about the name thing. So how about this: next time I'll tell you about the naming conventions in our house and you bring the warm brownies. That's something I really need.

Step Aside, Clarence Darrow

2009-04-24T14:54:00.009-04:00

JBear and I have been making deals all week. For the First. Time. Ever! We've been playing negotiating games with him for a year, but up to now, we've always had to introduce the idea of a deal and the terms of the deal.

We were on our way to the store and brought a "friend" with us in the car to sit in the passenger seat. It's always a little scary for the friend, but we talk him through it. Climbing into new places is a challenge for JBear with his visual-spatial issues, so we have our friend who is a little bit scared. That day the friend was Turning Head Baby. (Tune in next time for the hilarious world of names in our parallel universe.) Turning Head Baby made the ride to the store okay, but when we arrived, a car on the passenger side had its door open and blocked our way. "We'll check on Turning Head Baby when we return," I told JBear and he went along with that suggestion. When we returned, though, the passenger side was still blocked, so we couldn't check on Turning Head Baby. JBear was ticked off and he was letting Turning Head Baby hear all about it. We consider this real progress since before Floortime, all he could do to express anger was yell, cry, or throw.

J: "Turning head baby, you are NOT getting out of the car. Ever, ever! You are staying in the car ALL NIGHT! And I'm NEVER going to check on you!"
Me: But I'm just a baby! You can't leave me in the car all night!
J: "I AM leaving you in the car all night! You will not get out!

I must admit that at the time I was rather absentmindedly playing it out as I was concentrating on driving. Still.
Me: "But if you leave me in the car all night, someone will take me!"

Okay, being a bit pragmatic here and I really have no intention of letting the baby stay in the car.
J: "No one will take you! You HAVE to stay in the car!"
Me: "But a little girl will see me and want to take me home!"

Silence. I'm lost in thought a bit. Then it comes.
J: "So, here's the deal, baby doll."

You heard it right! HE STARTED NEGOTIATING. He's making a deal! Without prompting! By himself!
Me: (Very calmly) "Yes?"
J: "You get to come in the house and then you get to be happy."

So he didn't get the terms exactly right. But it's a start!
Me:"I'll get to come in the house and be happy, but what will we do about your being mad at me? Maybe I'll come in the house, then you can put me somewhere that I can't get out."
J: "I'm putting you under the BED, baby, and you're NEVER coming out!"

My little lawyer. The deals continued all week. With correct terms and conditions. Start up the labor union. Watch out, world!

Me: Okay, let's put on our warm clothes and eat breakfast.
J: Okay, here's the deal (spoken with real tears). I'll put on my warm clothes, then after breakfast, you'll put my pj's back on VERY FAST.

You see, footed pj's are JBear's favorite clothes in the whole world. He can live with a lot of frustration and disappointment as long as he has his footed pj's. Much like me and cute shoes. We have kind of a foot thing. And there he was, bargaining for his footed pj's. And we did put them on after breakfast. That was the deal.

So, here's the deal. You come back next time and I'll tell you why negotiating is so important for kids to learn. Especially kids with autism. Oh, and I'll fill you in on the name thing. It's not about exorcism, I promise.

Autism Is Not a Pie

2009-04-22T13:11:00.000-04:00

You say autism is a pie.
A pie of awareness topped with health care dollars
And a dollop of public patience.
And there's only so many pieces to go around.
And if my child gets a piece, your child will go without.
And besides, my kid doesn't look all that hungry
Maybe I could just give him some sensory cookies.
But autism is not a pie.

You say autism is a hospital.
Your child has been there a long time
And he needs a triple bypass.
And the doctors only have so much attention to give.
And besides, my child doesn't act very sick.
He only needs an angioplasty.
Maybe he'll be out tomorrow.
But autism is not a hospital.

Autism is an umbrella.
We are both parents who got stuck in a sudden thunderstorm.
Watching the lightening, waiting for thunder.
Worrying about our kids.
Wondering if we'll be able to get back home.
And besides, there's room for both of us under this umbrella.
Maybe we can share a cup of tea
While we wait out the storm.

Autism is a bridge.
We headed out for a walk in the park
And found ourselves lost in the forest.
But here we are on this bridge together.
Watching our kids stepping carefully over the rocks and sticks.
Stumbling sometimes. Falling behind sometimes.
We both want them to run in meadow with the other kids.
We may use different paths to get there
But we'll find our way.
And besides, maybe we can look for some wild azaleas.
While we're in the forest anyway.

Dragon Shadows

2009-04-15T19:39:00.019-04:00

If you haven't read Jess Wilson's post on her blog entitled "No boo-boos", go read it. Jess is an amazing writer. In that post, she tells about her panic and her daughter's delayed and anguished reaction. Get a tissue, go read it, then come back.

Every parent must have the same feelings when his child is in danger: sick to your stomach, crying, panicked, wildly out of control fear. But for parents of special needs children and especially parents of children with autism, we are dealing with more fear. It's more like post-traumatic stress, but it's not nearly post. When a child is diagnosed with autism, it's a trauma to the parent. All seven stages of grief. And it doesn't end after the initial diagnosis. Every milestone, every doctor visit, every comparison to other children can renew the grief. Since we're already stressed, moments of danger, like a child running toward the street or momentarily out of sight, can cause downright panic. And for a child with autism, managing the big, scary feelings is a major challenge. Emotions overwhelm him and he can't find a way back to being calm. Dealing with a parent's fear must be even harder. Since JBear has had such physical challenges, I've panicked many times when he's trying to climb up a slide, walk down stairs, get down from a chair. We've had lots of little boo-boos. If I were in Jess's place, fearing a major traumatic event, I would have done the very same thing. Full-out panic, tears, hugs and helping my child recover.

Big, scary feelings are something we work on all the time with JBear in Floortime. When he doesn't have a way to play out a scary emotion, it stays with him. For a long time. He replays it in his head. Like we all do. And when he can't release the big, scary feelings, he doesn't have much room for spontaneous fun. Some kids with autism retreat in the face of big feelings, like JBear. Some kids act out, like running, crashing into people and things, hitting, yelling. Adults usually recover from emotional trauma by talking about it. But children with autism, and even typical children, have trouble recovering through talk.

When we explore the emotions in play, it's a safe place for him to recover from big, scary feelings. We use very simple games. JBear tells me to make sad faces, angry faces, and scared faces along with appropriate sounds. He gets a chance to choose someone else's reactions and he feels more in control. We've had role reversals where I stay home in the room and he gets to leave while I cry. Then he's in charge of separation anxiety. We play baby getting boo-boos, dog doesn't share with anyone, daddy says no, bear feels like he's falling, and kitty goes to the dark basement and gets rescued. All to play out the scariness of anger, fear, frustration, anxiety, and sadness.

But a recurring favorite game is dragon shadows. Now, JBear is not afraid of dragons. He's not afraid of shadows. But he's chosen it as his symbol of fear. Anything can make a dragon shadow: all we need is a flashlight and a hand or a nightlight and a stuffed animal. We scare baby with a dragon shadow; we scare our animal friends. Sometimes JBear makes the shadow, sometimes I do. Sometimes JBear whooshes away the shadow, sometimes it just won't go away. Quite by accident, we discovered a fabulous dragon book with a dragon shadow in it. You've never seen someone so surprised and excited. As he gets older, the games will change and become complex. But we'll be dealing with the same emotions.

Recovering from frightening emotions with Floortime has been a powerful tool. He's learned to identify his feelings, to keep the communication going, to keep relating with someone else, and to discover that even big, scary feelings pass. And that's something every child could use. Not just for one specific trauma. It will be a tool he'll use for the rest of his life. It may not make the dragon shadows less scary, but we'll know what to do the next time we run into a dragon shadow.

Ain't Misbehavin'

2009-04-07T14:52:00.035-04:00

I often joke that since JBear's birth, I live in a parallel universe. I get reports from the rest of the world, but I'm outside its orbit. Before I entered this parallel universe, I had no idea it existed. At least with this blog, I have a kind of Star Trek communicator. If only it came with that very cute Lt. Uhuru outfit. And maybe a transporter.

I was talking to a friend whom I hadn't seen since before I moved to this parallel universe. I was amazed to hear from her that the rest of the world really doesn't understand autism. Some people think that they are so many cases diagnosed now that either it must be something in the water or it's just whiny parents who can't control their misbehaving children. Seriously.

Awareness of autism has certainly been raised in the past few years. Just ask a mom who raised a child with autism 30 years ago. They were told there was no hope. Their child would never walk or talk. They were told to institutionalize their child for the sake of the family. Those moms and dads deserve much more recognition for the heartbreaking decisions they had to make.

These days, we see many articles in the paper, reports on television, and fundraisers for autism. But now, many people know the word without understanding what it means. Since autism is identified by a set of symptoms and not a blood test or MRI, people think it must be bad behavior. If a doctor looks at a child's behavior and pronounces it 'autism,' why can't you just change the behavior? First, autism is brain-based. While we don't know the mechanism, we do know the brain is functioning differently. Sensory messages aren't traveling along the neural pathways. Serotonin levels are different. So it's very important to distinguish between can't and won't.

I know it's easy to judge someone on their behavior. It's human nature. We have to make snap decisions all the time. Should I trust this person? Am I in danger right now? Is this person drunk or ill? But maybe if our safety and health aren't at risk, we should stop judging. I must admit, it can be fun gossiping about Beyonce or Britney. But if we make ourselves feel better by tearing other people down, we have a very shaky foundation for our own emotional health and for our relationships.

Judging someone involves unmet expectations. People have expectations of each other's behavior. People even have expectations of children. Children shouldn't be crying and screaming in a supermarket. Children should accept hugs from friendly admirers. Children should answer questions. Children should play with other children on the playground. Social situations are full of expectations.

Now let's add context. For a child with autism, the supermarket can be an overwhelming experience of lights (bright fluorescent lights, flashing red lights on coupon machines, flashing fake lightening in the produce department) and sounds (talking, muzak, beeping scanners, coffee grinders, juice blenders, purse zippers). So he cries. For a child with autism, a person moving in fast and close may be going to hug him or run into him. So he backs away. For a child with autism, a question from someone may not make it through other noises or he may not be able to process it quickly enough to answer. So he doesn't answer. For a child with autism, other children move too quickly, talk too fast, and act unpredictably. So he can't play with them. Not won't play with them; he can't. So what may look like a temper tantrum to you could be an overwhelmed nervous system that feels under attack. What may look like a child who's ignoring you could be a child whose auditory processing is five seconds slower. What looks to you like an uninterested, aloof child could be a child who is coping with too much light, noise, and movement.

An expectation story. An elderly woman approached us in the supermarket. Kids in grocery carts are chick magnets, but they are also captive audiences. "You look very distinguished," she said to JBear, "Do you know what that means, young man?" "No, we don't," I replied wondering how in the world she was going to explain this to a 4-year old. "It means famous," she said, "Do you know what famous means?" again directed to JBear. "Well, no...," I hesitated. "Well, do you know who Mr. Rogers is?," she continued. "No, we don't watch Mr. Rogers." "Well, go look it up," she snapped and wheeled her cart away. Sometimes I'm glad JBear isn't absorbing social cues. People expect a lot of kids.

I've always admired people who are open and accepting of everyone. No matter if someone is shopping in his pajamas. No matter if someone raises llamas while everyone else manages hedge funds. No matter if someone wears highwaters instead of hightops. The more we can accept differences in others, the more we'll accept differences in ourselves. When we let go of impossibly high standards for everyone, including ourselves, we stop judging. And that means we'll be gentler with ourselves and gentler with everyone else.

Most people don't really know what autism is. Most people don't understand what DIR/Floortime is. It's our job to help them understand. But it's not our job to judge each other. Most of us are doing the best we can in our own universe. Our mission: to explore the strange world of autism, to seek out new people to educate, and to boldly go where no man has gone before ... with less judging ... and some really cute shoes.

Labels

2009-03-26T21:11:00.017-04:00

Does anyone remember The Kids in the Hall? Scott Thompson had a recurring character named Buddy Cole who regularly gave hilarious monologues from his own bar. In one episode, Buddy coaches an all-female softball team when he realizes he will have to play to win the game and save the team.

Buddy: Hang on, Sylvia. Give me that stick.
Sylvia: But, Buddy, you're a man!
Buddy: Labels.

Labels, indeed. Labels can be harmful or helpful; it all depends on context. Pre-judging based on a label can lead to prejudice. When some people hear "He is gay," they think of a stereotype rather than an individual. But labels can be a language shortcut saving us from having to re-explain an idea as in "He's a speed dater" or "She's a food maven."

Our journey comes with its own label: autism. But what is autism? Some don't know and some are sure they know. Some are sure JBear's diagnosis is wrong and some are ambivalent. We've all heard that autism is a spectrum, but what does that mean exactly? It means every child with autism is different. Every child with autism is an individual with his own deficits, his own strengths, and his own needs. And every child with autism needs his own individual, specialized treatment.

But if every child is different, how can they all be diagnosed with the same label? It's confusing, I know. Since JBear was born, we've run into many grey areas. Grey areas are uncomfortable; they hold no clear answers. Most of us don't want grey areas; we want clear black or white. We've had to learn to live with a lot of grey.

So, what is autism? Very simply, autism is an impairment in three areas: relating (social interaction), communicating (verbal or non-verbal), and thinking (such as emotional thinking, initiating ideas, or repetitive speech or behavior). Some children with autism have cognitive impairments; some do not. Some have motor problems, like fine motor (for example, tying shoes or handwriting) or motor planning (being able to accomplish a goal through planning a series of steps). Some have auditory processing problems (I can hear you, but I may take a long time to process and understand what you are saying). Most have sensory issues. Some have unusual behaviors (for example, hand-flapping or toe-walking). Autism and its symptoms range from mild to severe.

There are still myths afloat about autism. Such as, a child with autism is not emotionally attached to their primary caregivers (not true). A child with autism doesn't respond to their name (many do). A child with autism doesn't make eye contact (not necessarily true). A child with autism screams (some withdraw and are silent). A child with autism lines things up (some do, but some have other repetitive behaviors, like stacking, spinning wheels or plates, opening and closing doors; or some have restricted areas of interests, like lizards). A child with autism is not happy or affectionate (definitely not true).

So, if every child with autism is different, how is a child diagnosed? Autism is a set of symptoms. That's all. We don't understand what causes autism or how it manifests in the brain. All we can do is group the symptoms: relating, communicating, and thinking.

Many people have a problem with the label. "What if it isn't autism?" is a common refrain. I always return to the symptoms: impaired social interaction, impaired communication, impaired thinking, and repetitive behaviors. JBear has each of these. I don't blog about his deficits often. I don't feel it's important to justify his diagnosis. And every parent understands how very difficult it is to constantly list their child's challenges.

And, ultimately, I don't care what the label is. What IS important is getting JBear the right treatment. We asked questions long enough, searching for something to help our child. We finally found help when we received a diagnosis of autism. For us, a label meant "Yes, that's what I've been trying to explain." And it meant "Finally, we can help!" And, most importantly, "Yes, there's hope." Everyone wants to embrace hope and to dream for their child. We found our hope after we found our label. Right now, we have a label that says "autism." But, more importantly, we have a unique individual labelled "JBear," who is a beautiful, affectionate, smart, funny child. Your journey may be different. Just like every child with autism is different. Just like every child is different.

So, Buddy, I'm with you. I'm not here to argue about labels. Let's just play.

Coming Out of the Autism Closet

2009-03-17T14:54:00.016-04:00

When we first suspected autism, we never said the word. We danced around it. We talked about the "A-word," "the spectrum," or "whatever it is." By the time JBear was diagnosed with autism, I was sure it was the right diagnosis. The challenges he was having relating to peers, communicating with others, and repetitive play made it clear. But we still couldn't say The Word. Although we had already managed and worked through several physical challenges, a mental health diagnosis was, in some ways, the most frightening. While we could move JBear's legs to teach him to crawl or do wheelbarrow walks with him to strengthen his arms, we could not reach into his brain and physically manipulate anything to help him now. And, like it or not, we are still faced with a stigma about mental health in our society. So while we struggled with acceptance, our first instinct was to start therapy with Jack immediately, work hard with him, and hope he made quick progress, just as quick as he did with his physical challenges. After all, JBear was an amazingly hard worker. He had always met every goal we set in early intervention. We harbored the dream that by school age, he would have caught up.

Now after over a year of therapy, we've made amazing progress. JBear connects with people; he's curious about other kids; he identifies and expresses emotions; he can work through unpleasant feelings; he's able to express his thoughts. But it's clear we still have challenges before us and the A-word will not just fall away.

In the meantime, we've worked through our own emotional challenges of grief, acceptance, regret, and fear. And we'll continue to struggle with them as we cycle through the highs and lows of achievement and dreams delayed. During the year, we revealed JBear's diagnosis to only a very few of our family and friends. In some ways, it was a matter of self-preservation; we could take only so many assaults and managing others' emotions was beyond our capabilities. We had enough on our plate. We also felt that we were protecting JBear's future. Suppose he was pre-judged by his peers or other parents? Suppose a school denied him? He is a happy, smart, affectionate, funny boy. No matter who he is an individual, many hear "autism" and make assumptions. Rainman. Headbanging. Screaming. Unreachable.

But during that year, we also felt the burden of a secret. Secrets fester. Secrets infect. I worked to keep up the pretense that nothing was wrong and we were just hanging out having fun, while all the time I was working like a madwoman to help my child. I started feeling ashamed when I had nothing to feel ashamed about. I felt like I was trying to hide the autism and was ending up hiding JBear. I felt more and more isolated. All the while, I felt that people surely realized something was different about JBear. And as he got older, it was getting harder to gloss over the differences.

When we finally came out of the Autism closet and revealed JBear's diagnosis openly, I felt a huge relief. Everyone has been supportive, understanding, and willing to help. Everyone who knows JBear loves him for who he is and isn't blinded by a label. I no longer feel isolated, alone, or ashamed. I'm connected to a warm, loving community of Floortime families and professionals. And I'm connected to the rest of my community by helping to educate a few people. Maybe it's not the right decision for some families. As JBear gets older, it may no longer be my decision, but his decision if and who he tells.

But, autism is affecting more and more families. There's no shame in it. These are great kids who need a little extra help. And when more people understand autism and understand the challenges and the treatments, we're all better off. And when more people see a beautiful child in all his individual glory instead of seeing Autism, we'll be a better world. We are all connected - whether we're in the closet or out.

The Autism Chicken or the Sensory Egg

2009-03-07T14:43:00.001-05:00

I saw a movie recently ... in a theater ... with my husband. It was the first time in four years - a real event deserving of a whole post in itself. The movie was Revolutionary Road, starring Kate Winslet and Leo DiCaprio, and probably wasn't the best choice considering. I hear it's a good novel, but I had a very difficult time becoming interested in the movie because it involved lots of midlife existential angst. You know, how did I end up in the suburbs, in this cubicle, in this argument, type of musings. The characters had a good income, a lovely house, two children, boy and a girl, who played or remained out of sight with no supervision, no exerted energy, and no extra thought. You can see why I had a difficult time relating. The overarching theme was adventure versus security. Should we strike out on a really romantic adventure of living abroad or stay in the suburbs with the suit and the commute? Does happiness depend on our environment or can we make our own happiness wherever we are?

I'm sure of the answer for me and, I would venture, most of us. Jon Kabat-Zinn sums it up in the title of one of his books, "Wherever You Go, There You Are." You take your baggage with you, physically and psychologically, so a change of scenery means I'd be dealing with my same emotional issues in a different locale. Maybe with an umbrella in my drink.

But what about kids with autism and sensory issues? A majority of children with autism (some estimate 80%) have sensory problems. Some are oversensitive; they react intensely to touch, sounds, taste, smell, movement, or sights. Some are undersensitive with a need for loud sounds, heavy hitting, bright colors, spicy food, or lots of movement. And it's usually a mix; some kids may be underreactive to touch (not feeling pain, for example), but overreactive to loud sounds.

JBear is generally overreactive to everything. He avoids messy play. Certain sounds, like zippers, seatbelts, or vibrations, scare him. He can't tell where his body is in space so he feels like he's falling. Watching children move makes him feel dizzy. He can't find his own shoes in a strange room. He sees images in negative space. He sees similarities between doorways and people. Flags or leaves blowing in the wind frighten him.

So, environment greatly affects kids with autism. If we imagine how hard it is to function in a body that doesn't feel anchored by gravity, that feels like it might fall all the time, where you can lose sight of your mom in a strange room, where a noisy restaurant crowded with children feels like a tilt-a-wheel ride at an amusement park, we can imagine the anxiety that goes with it. And how difficult it would be to pay attention to people in all that chaos. Did the sensory problems precede the social and communication deficits? Did they cause the autism? Not all people with autism have sensory problems. And not all people with sensory problems have autism. This question may always be a chicken and egg problem.

And ultimately, the only response that matters is that I'm aware of how environment affects JBear and I'll continue to tailor his environment and his therapies to be the best for him. I'm also teaching him to be aware of how his sensory system works and how he can help himself. He already knows that his body gets sad when he gets too hungry, that he needs a hand when he feels like he's falling, that lollilops help him when he feels anxious, and that swinging and singing make him happy. And when we know what we need and how to make ourselves feel better, we're all happier. That's not an autism thing; that's a human thing.

Literal Land

2009-03-03T21:26:00.006-05:00

Part of our journey involves frequent trips to Literal Land, where metaphors and slang are not taken for granted, but parsed carefully. We think they are charming. Naturally, we think everything out of JBear's mouth is charming (doting mother alert). Here are two:

J: Grandmom, are you excited to go see Miss Julie?
Grandmom: Yes, I'm looking forward to it.
J: No, Grandmom, you're looking at me.

Dad: Okay, I'm going to go pick up Neil.
J: Did he fall down?

Seeing Anger Differently

2009-02-28T16:52:00.001-05:00

Anger is frightening. I remember the first time JBear got really angry. He was a young toddler and I can't remember what I said (selective memory), possibly "no" and he got mad and hit me. I felt the mercury in my internal thermometer surge through the top of my head. My anger and the speed of it startled me. I sat with my son in time-out and regained my composure. Why had his anger made me so mad? He was a toddler, after all, with no discretion and control and that's what toddlers do. Perhaps because he is such a happy boy, his anger just surprised me. But he did get frustrated easily - his ideas far exceeded his fine motor skills and he could just as easily throw a ring that wouldn't stack properly. In those early days, I was happy for my super-quick reflexes, trained by years of anxiety. I ducked a lot. I thought at first that I should try to stop him from becoming angry, so if I saw his internal temperature rising, I would ask "Are you getting mad?". And he quickly learned to say "no." But I felt I wasn't teaching him to manage his anger as much as to repress it and I dropped my tactic.

Later I read Greenspan's exhortation to be just as accepting of a child's anger as his other emotions. And here's another instance where I am forced to face my emotional challenges so that I can help my child. Somewhere along the way in my social encounters, I learned that anger is unacceptable and rather than risk rejection, I pushed it down. After repressing it for a while, it usually boils up in one form or another. I remember one particularly embarrassing situation at work when a boss was bullying me and, to my horror, I began to cry. I wasn't sorry about my performance (my boss's interpretation); I was steaming hot mad. But tears were a more acceptable way for me to express anger than yelling was. But what if anger is just as valid an emotion as others, one we allow ourselves to feel and choose our response to? Next time, I get mad, I'm going to step back, notice that I'm angry, then take a breath. Then I'll think about what I want to do with it. Feeling anger doesn't make me bad; it alerts me that someone is crossing a boundary. But not every crossed boundary needs a cross word. Maybe I need to reevaluate my boundary, maybe I need to go exercise. Sometimes I choose to express it, sometimes I let it go. The problem isn't the anger itself; it's letting it build up until it explodes. Sometimes if I just recognize and accept my anger, I can release the stress.

Now back to Floortime with JBear. I want him to use his full range of emotions but also have a full range of options to express them. So I have to accept that he will be angry. It's not a problem to be fixed; it's another opportunity for Floortime. So now when JBear gets angry, I give myself a quick reminder: Anger is okay; take a breath and react calmly. And then start asking him: How mad is he? A little or a lot? Does he want to hit a pillow or throw a heavy stuffed animal? Does he want to yell or is he ready to play again? When I meet his anger with equanimity, he learns to deal with it calmly, too. And when he's calm, I can ask why he got angry and what we can do next time. Once we're through, he's learned to keep the circles of communication going even when he's mad, he's learned that anger doesn't have to hijack his whole system, and he's learned that he has options in how to express it. Hey, wait a minute! All those things I could do better, too. And isn't that just so sneaky about Floortime.

Talking to Myself

2009-01-31T16:21:00.000-05:00

I heard a Backyardigans song (don't laugh - angels come in strange packages) recently that inspired me. It's called "The Mermaid Song" and it's sung to the tune of "The Yellow Rose of Texas." Don't be shy, sing along:

Oh you probably think that mermaids are lovely, nice and sweet
We hang out in the water with tails instead of feet
Well yes, you're right, I'm cute and nice, but when the sea gets rough
I'm not only beautiful, I'm extra, extra, tough!

You said it, Tasha. This autism sea is rough and it's time to be extra tough. So lately, I've been thinking that I need to change the slogans in my head. Language is very powerful; it can be soaring rhetoric that lifts a nation or caustic vitriol that inflames a riot. Even the words we say to ourselves influence our thinking, so the way I talk to myself about a situation can change how I feel about it. In his book "Learned Optimism," Martin Seligman says that people who ruminate a lot and who are pessimistic are more at risk for depression. Rumination alone is okay and an optimistic ruminator can be happy, but a ruminator who is a pessimist (negative, all-encompassing thinking) is headed for serious unhappiness.

I haven't consciously chosen a motto for this journey I'm on. You wouldn't think I'd want a catch phrase for raising a child with autism. But I realized that, unconsciously, I've been thinking "It's hard; it's unfair; other people have it so much easier." Uh-oh, danger, Will Robinson! So, now that I'm aware of what I've been telling myself, I want to change it. Tasha's song hit a nice note: "I'm not only beautiful, I'm extra, extra tough!" I can talk gently to myself: I'm beautiful or any adjective that makes me feel gentle and caring like lovable, hugable, adorable, floortime-able. The gentler I am with myself, the gentler I am with everyone else. And I can handle this difficult circumstance 'cause I'm extra, extra tough.

Another possibility I like reminded me of the old Chinese curse "May your life be interesting." Babette de Rozieres is a successful restaurateur in France who happens to be female and black and a self-taught chef from Guadaloupe (More magazine, Dec. 2008/Jan 2009). She says "I am a warrior. The more difficulties there are [...], the more I impose myself. If things are easy, it's not interesting." Sometimes imagining myself a warrior is helpful; most times it's not because, well, I get worn out fighting and it doesn't make me feel peaceful. But I can appreciate the interesting aspect. De Rozieres grew up in Guadaloupe, experienced racism from her own family because of her darker skin, moved to Paris on her own, and, determined to be a chef, entered the white, male-dominated restaurant business, a very tough, uphill battle. She has had an interesting life. Hard, yes, but very interesting. I recently reconnected with an old friend and we caught each other up on what had happened in our lives since we last saw each other. After hearing his story and telling mine, I thought to myself, Wow, it is a very interesting story. If things had been easier, it would not have been such an interesting story. As another friend tells me, "You oughta write a d*** book." I like the profanity; it acknowledges the extraordinary challenges we've had.

Of course, when I'm in the middle of it, I'm not thinking, wow, this is interesting! Nope, I'm caught up in the roiling, heartwrenching emotions, good and bad. That's when I think about Steve Martin in the movie "Parenthood." Parenting is a rollercoaster, with no end zone, no goal line. The ride can make you scared, sick to your stomach, laughing, crying, and thrilled. Some people like rollercoasters; others are too frightened to enjoy the thrill. Me, I've always hated rollercoasters. I couldn't stand the height, the speed, giving up control and being tossed all around. But maybe, just maybe, I can get used to it. Let go a little and enjoy the fun bits. Don't dwell on the scary bits. Recognize that there will be highs and lows and it will all be beyond your control. But focus on the laughs and the thrills.

Hmmm, Tasha, Babette, Steve Martin - what a mixed lot of role models! But, with their help, I'm replacing my internal dialogue. On tough days, I'm gonna write part of my d*** book because it really is an interesting story. And when I'm in the middle of the rollercoaster, I'm going to let go and laugh. 'Cause I'm not only beautiful, I'm extra, extra tough.

What's your catch phrase that helps you through?

I've Got it Bad and That Ain't Good

2009-01-17T16:37:00.000-05:00

I've come down with a bad case of What If's. So much of my anxiety comes from fear of the unknown, fear of the future. What if he doesn't improve? What if he can't learn in school? What if he can't fully engage with people? Will he have friends? What if he can't be independent? I tend to do this a lot. Even if I could know right now what happens in the future, would I change what I'm doing today? Suppose the future holds the worst of my fears, would I stop playing, stop floortime, stop investing? Suppose it's the best outcome possible, then what? Even now, thinking over the past, way back, knowing what I know now, what would I have done differently? All fears aside, I would have enjoyed life more, had more fun. My recent regret, not catching the signs of autism, has not been allayed by telling myself we were surrounded by professionals who didn't see it or that we were working on so many physical therapies. Still, what would I have done? Played more, done floortime, essentially - again -had more fun (believe me, way more fun than traditional physical and occupational therapy).

Still my rationalizations about the past haven't stopped my worries about the future. So, I'm trying to combat the What If's by staying in the present moment. First, I have to stop the worrying. Easier said, right? Sylvia Boorstein in her book "Happiness is an Inside Job" talks about interrupting the unnecessary ruminating with a few phrases like these: "Sweetheart, relax. Take a breath." The message is meant to shake you out of your worrying, recognize your anxiety, and live a little more peacefully. I especially like the "sweetheart" to remind me to treat myself gently.

After I've taken my gerbil brain off its wheel, I try to think about what I can do right now to ease my fears. What's happening right now with my child? What can I do right now to love him, help him, make his life more fun, loving, peaceful? How can I enjoy this child - not the child in my mind that I'm creating - right here, right now? Keep my head in this game we're playing, focus on this moment right now, and have fun. What can I do to make this moment more playful and more fun. Laughter helps everyone on the team - it helps me; it helps J-Bear. But having fun when you're worrying is impossible. So if I tell myself I'm putting the worry down right now, just for this moment, and I'm goingto spend the next twenty minutes having fun: get goofy, make a funnynoise, use funny voices, be silly. Or spend the next twenty minutes soothing, or singing, or swinging. But whatever it is, I'm going to put my mind entirely in that moment and think only of that activity. Not the next one, or the rest of the day, or tomorrow, but in that moment.

Getting your mind entirely into an activity and losing yourself in the moment is essential to happiness. In his book "The ChildhoodRoots of Adult Happiness," Edward Hallowell writes about flow: the total absorption in an act where you lose track of time, place, and self. It's the hallmark of great athletes, musicians, artists, and successful people and a key to happiness. When we lose ourselves in flow, we're happy. When children play and get into the game, they're learning about flow. So by inventing our games and getting into flow, I'm not only teaching JBear about how to make himself happy, I'm giving myself an opportunity to be happy, too. Now, I know how difficult it can be to get totally lost in a game of, say, pouring water down a drain or hide and seek for the zillionith time. But I tell myself two things: I can do almost anything for twenty minutes. And it is magic - it's not my childhood magic; we were all thrilled by different things as a child - but it is magic and it's his magic. If I see things through his eyes, well, practically everything is magic! I mean, think about the plumbing. Water goes down a drain; where is it going on its journey? Can I picture it (well, minus the nasty parts)? Are the pipes straight, right angles, under the house,the sidewalk? How is the water cleaned? Maybe I can get lost in drains for twenty minutes. And if I'm totally lost in drains, then I'm not worrying about the future. And if I think hard enough about drains, maybe I can come up with an even better drain game that willbe even more fun. Win/win, not worry, worry. So, sweetheart, go play.

Grief as a Guest

2008-11-16T15:43:00.001-05:00

I struggle to not compare my son to other children and finding deficits that I put on my mental list to work on. It's been difficult not to see him as a project to be completed. We've worked on many aspects of his development, so I guess I've always harbored the hope that when we finish x, he will be caught up. I really want to discard this idea altogether, but I've struggled with it. Grief is a long process and waxes and wanes. But I'm trying to let go of the idealized child, the child I had in my mind for years prior to giving birth. I know it's the real child that needs my love and my help. Once I understand and truly feel that he is just as he needs to be, that I don't need to make the repetition or obsessions go away, then it will be good for both of us. I want to really understand that those are his ways of coping -and that's okay. I want him to feel valued, that he belongs, and that he has a place in this world. I don't mean to sound that I don't value my child, or that I reject him, or that I don't feel connected, or that I don't love him so much that it hurts. I wouldn't trade him for the world. But do I want his life to be hard? No way. It's a fine line between I want things to be different for him and I want him to be different.