Beautiful Boy

What a strange and beautiful son I have...

Last night Stephen fell asleep clinging to the foot of his bed. I went in to rotate him around to the head-on-pillow position, but first I had to remove the stuffed animal menagerie piled up in the center of his bed (leaving him a one foot space in which to fall asleep). As I moved the twenty-five or so assorted animals to their basket, I noticed that he had also placed some Thomas trains, plastic and wooden, in the mix...as well as about 30 pieces of wooden track. I moved those to their respective boxes, along with two plastic Slinky's, a Bob the Builder ball, a golf ball, and, inexplicably, an extra pillowcase.

I paused to look at the (finally) still, quiet form of my little boy, his face relaxed and peaceful. He looks so normal when he's asleep - there's no hint of a problem or a disorder. Just a handsome, healthy-looking child, lost in dreams and slumber.

And my gaze wandered to the pile of objects on his table...why a golf ball and Slinky's? The pillowcase? You can imagine that any child might like to snuggle with stuffed animals at bedtime, and Stephen is no different in that respect. But the other stuff...this odd, quirky collection of items that he obviously finds important...what's that about?

In my mind's eye I see him, realizing that he's getting tired, moving around his room to gather up the things that hold meaning for him - his choices aren't clear to me, but they are to him. He is a real little person, with likes and (STRONG) dislikes, and I find myself feeling glad that he is comfortable and has a place to just be Stephen. Isn't that a lesson we all need to remember? Sure, it may look a little weird sometimes, but laugh and enjoy and be who you are, every day. Stephen knows this, and practices it with great style.

Sometimes, though, this strange and lovely son of ours throws us a curve ball.

Much to our dismay, last Friday was haircut day. To give a bit of history: I've mentioned before how bad haircuts have been for the last 6 years or so. We're talking serious levels of trauma for everyone involved. We used to have a friend of the family cut his hair in a regular little-boy-style scissor cut. I would hold him in my lap and she would cut here and there, as best she could, while I fought with him. He would scream and cry and sweat and struggle...it was difficult in an epic way. After the cut I would literally be unable to lift my arms to write a check to pay for it. As Stephen grew, David got involved, holding his arms and head while I held the rest of him.

People would oh so helpfully tell us just to "shave his head." Well, I just couldn't stomach the idea of my precious baby-faced boy looking like a convict (that was my unfortunate mental picture). I didn't want to force that on him and make him look funny. So we persevered.

About a year or more ago, David was at the barbershop and saw two young boys getting "clipper cuts" with slightly longer bangs left at the front. He assured me that it looked really cute, and, even more importantly, it was FAST! So we decided to give it a try and took Stephen there. It was still monumentally difficult, mind you...still a struggle and a fight, and we all felt like wrung-out dishcloths by the end. But the end came more quickly, so we decided that this was the way to go. Plus, the kid looked damned cute, to boot.

Fast-forward to last Friday...I had worked up what's called a "social story" about going to the barbershop. I used a simple narrative: "Stephen's going to get a haircut today..." and so forth, and inserted photographs of Stephen, a typical barbershop interior, a barber chair, clippers ("that make a BUZZZZZZZing noise, but they won't hurt Stephen"), then a bathtub, and finally, the pièce de résistance, a picture of McDonalds. I didn't have a whole lot of faith that this story would work, but Stephen's come so far in communicating that I thought it was worth a try.

So as we got him ready to leave home, as he always does when we make preparations to GO someplace, he immediately started asking for "fries/burger." This gave me an opening to start showing him the story. "First haircut, then McDonalds." I repeated this over and over and over, and began flipping the pages of his book, and mimicking the feel and sound of the clippers on his head. He giggled and parroted back, "Bah-bah-shop. Kip-pers." But I wasn't buying it...

We got in the car, and I continued to read him the story while David drove and Kerry sat in the front seat reading. We drove to the town I grew up in (where the wonderful lady who helps us with this has her shop) and Stephen was SO loving and happy that I knew he hadn't absorbed my story. With a sinking feeling I accepted his kisses and hugs, the whole time knowing what a 180° turn we were going to experience when we arrived.

We got to the shop, and Stephen began to whine a little. "Come on, buddy. Time for haircut."

"No."

"We have to..." and we haul him out of the car.

"NO."

We got into the shop and I pulled out his book. "See, buddy? Barbershop. We get haircut here."

David went and sat in the chair, as usual, and I led Stephen over. I could immediately sense a difference. He was walking calmly, without pulling back on my hand. I helped him climb into his daddy's lap, and we wrapped a sheet around him. Ms. Tommie showed him the clippers, and turned them on, away from his head. He looked carefully at them. As she took the first pass through his hair, my little boy looked at me with his moss-green eyes, and said, very quietly, "Buzzzzz?"

My eyes were already misting over as I said, "Yes, baby. Buzzzz!"

From that moment on, other than typical "oooh, that tickles" flinching, Stephen sat calmly in his dad's lap, letting his hair be cut. Throughout the whole haircut, the three adults kept exchanging glances...we were afraid to breathe lest he fall apart. But he didn't...he watched himself in the mirror, he talked about Thomas and Gordon and Duck...and he never fought, never struggled, never shed a tear.

His dad and I, on the other hand, shed quite a few. I don't know that I've ever smiled so much...and been so overwhelmed by thankfulness. Instead of the trauma we'd been expecting, (both David and I were nauseous all day dreading the afternoon) we were rejoicing. We were absolutely thrilled with him, and with the amazing knowledge that he had definitely understood all the pre-emptive planning and explaining. He obviously didn't WANT to get it cut (hence the strong "No's") but he sat through it as any boy would've.

Miracle? I don't know. A triumph? Most certainly. For perhaps the first time, Stephen understood what was going to happen because he could follow the story visually beforehand. Even though I didn't realize it, he took in what I said, and was able to mentally prepare himself. Did he really have sensory issues with haircuts, as we'd previously assumed, or was it just unfamiliar and frightening because he didn't GET what was about to happen?

Either way, it was a eureka! moment, a red-letter day, the first observance of "Stephen Got a Haircut and Nobody Got Injured Day" - and we look forward to celebrating it again in 4 months or so. Hopefully. :-)

Here's our little prince...

Oh, and he got extra french fries that day.

Building a mystery

It's 9:05 a.m. and I am exhausted. I feel like I have run a marathon while simultaneously being beaten by a stick and juggling Ginsu knives.

Stephen woke up in a decent mood. "Time to get dressed for school!" I chirruped in what must be an annoyingly cheerful tone.

"No." A good solid answer. Not the one I was hoping for, but I can work with this.

"Yes, buddy! Time for school!" (he's not buying this)

"No!" And so the fight ensues. "Thomas and James compuuuuuu."

"No, time for school," still with a smile.

"Juggle Book...watch."

"Time for school," delivered through slightly clenched teeth.

We got him dressed, and he ran off to his room. David went in to try to cheer him up while I got his shoes. He let us get his shoes on deceptively easily...only to pull one off as soon as I got the velcro fastened.

Argh.

How can he do SO well most days and be a disagreeable grump on days like today? Well...I guess everybody has bad days, but Stephen's are so unpredictable, and he can't say, "I wish I could just stay home today," like Kerry occasionally says.

So, Stephen refused to put on his backpack, refused to walk down the hall without prodding, and then flatly refused to go out the door. He laid on the floor and began pounding his heels. David got him up and out the door. Usually by this point, if he's cranky, he accepts his fate and will sometimes almost magically transform into happy Stephen, having gotten through the transition trauma.

Not today.

I had to drag him down the stairs and into the car. By the time I got his seat belt on, he had both shoes off. Socks were next. He screamed and cried till the car felt like it was going to explode. (Mostly) unscathed I drove determinedly out to the street and started on our way. At the first intersection he grabbed handfuls of my shirt and pulled for all he was worth. When that didn't stop me from driving, he moved to my hair (which is just past my shoulders) and pulled. Hard. It brought tears to my eyes - tears of pain and of pure frustration. So he pulled, I drove, trying to get him untangled without having a wreck. I kept asking, "Stephen, WHAT do you WANT?" He would echo it back in between screams.

Finally I pulled off the road and, for a moment, wanted to keep driving at full speed and ram my car into the building I parked beside. I turned around, and bellowed, "WHAT is WRONG with you?"

["Gee, mom. Maybe I have some sort of bewildering and maddening developmental disorder. Try living inside my head for a day."]

There he sat, red faced and snotty, hair much too long and disheveled, crying. He got my hand and had me push on his chest, which he likes, and then his chin. I just looked at him. Part of me wanted to just turn around and go home. But I can't do that. Ultimately he will benefit so much more from being taken to school...so we pressed on.

We got to school, and fresh tears began flowing. I got his socks and shoes back on, and he didn't want to get out of the car. I summoned up some brute strength and got him out, but he wasn't happy. His aide (bless her) who usually runs the carpool system saw me struggling, handed off her stop sign to someone else and came over to help. She calmly talked to him and he took a few steps. We got him to his room and he signed in as usual. He hugged me and sat down at the computer. He looked at me and said, "Good-bye."

Rather anticlimactic, don't you think?

I don't know why mornings like this happen. Sometimes (MOST times) he is a delight - but when he isn't? God. It's just awful. It's heartwrenching and frustrating and fury-inducing. Not fury directed at a helpless child, but at that THING that lives in his head and takes over his personality at times.

I'm still waiting to hear from his aide. She's supposed to call me and let me know how he's doing. He'll probably be fine, and so we'll keep going, fighting our way through the dark forest, never knowing what mystery lies around the bend.

In the wee small hours

Wow. I'm barely squeaking in with a March entry. So much for my weekly writings... It's not that things haven't been happening, going on, etc. - Stephen is doing remarkably well with his new teacher. He's still reading and has progressed to doing addition, which frankly blows my mind. But, for whatever reason, I just didn't feel inspired to write this stuff down. When I'd think about it, I'd feel this weird pressure to "produce," and this blog has never been about that. I figured when or if something needed to be said, I'd know. What follows falls into the "I've got to get this out or I'll lose it" category - nothing earth shattering here, just junk I need to vent.

So here we go.

Stephen and I got up at 2:00 a.m. (for the second time in less than a week). Well, HE got up then. I laid in bed and thought/hoped/prayed he'd just drift back to sleep. Finally, at 2:50, I realized that wasn't going to happen. I got up and checked him - his pajamas were wet, but the sheets were dry (hallelujah) so I got him changed into clean PJ's and headed for the couch.

He came and laid down with me, but only for a minute. Then he was off to his room to turn on the TV for the early morning video-go-round. If you're not familiar, the "video-go-round" is Stephen's preferred method of watching. It's simple. You put in a video, he watches for anywhere from 2 seconds to 15 minutes, then he unplugs everything and brings you another video. Repeat this process approximately 20 times. Now, the kid is charming (mostly) - he's using his words to explain what he wants to see..."Thomas and James...WATCH," for example. It's really cute.

It's not as cute at 4:00 a.m. though.

At around 4:30 he came into the living room where I was fitfully dozing, and said, "Ten Years of Thomas...WATCH," but then he started saying "Off." Now, usually that means he wants lights turned off. But since the room was dark I ascertained that he meant "On." That concept is still not clear to him. Anyway, I said, "No, buddy...it's still nighttime..." which brought on a sit-in on the living room floor, whining at increasingly high volume..."OFF!!!!" Finally, I broke. I mean, what am I supposed to do? Fight the battle and risk waking everybody else in the building up, or give in? I gave in. I marched around in a fury, turning on lamps and cursing under my breath..."He won't even BE in here, why should I do this? I have to do this or he'll freak out. I mean, he'll be in his ROOM for god's sake..." Then I turned to him, standing there in his baseball pajamas, shaggy haired and precious, and I ripped the video out of his hands, snarling. Joan Crawford would've been proud. My son, who cannot help waking up, who was being fairly pleasant, who has god knows what going through his head at any given time recoiled from me with a look of fear on his face. I hated myself just then. I hated what I was allowing to control me. I was just so damned mad at...something. All I wanted was a dark room so I could sleep for 5 minutes in between video changes...but then in that one moment, I was ashamed. I was mean, and there's no excuse.

After he recovered, he toddled down the hall to his room and waited for me to follow him and put in the tape. As I sat cross-legged on the floor, he came to me - no hesitation or fear - put his cold little hands on my face, and turned it gently so he could kiss me. And I thought I couldn't feel any lower...

I went back to the couch in the living room that was lit up like Times Square, and let myself go, just a bit. I needed to...it wasn't a loss of control, or letting my emotions run wild. It was simply acknowledging to myself that, while I strive at all times to be patient and loving, sometimes I'm going to fail. Most kids I know are pretty forgiving, and Stephen seems to be extraordinarily so. Not that he intellectually knows, as Kerry does, that sometimes Mom messes up...but somehow, he understands in his own way that Mama is mostly about love and hugs, not angry looks and frustration.

Soon enough it was 6:00 a.m. and time to get Kerry up so he could get to choir practice by 7:00 a.m. He is a classic sleepyhead, and came dragging in yawning, "I'm so SLEEPY!" Wouldn't you know it? Mommie Dearest reared her ugly head and growled..."Yeah? Well, try getting up at TWO A.M.!!!" with two fingers stabbing the air for emphasis. He peeked out from under the quilt and quietly said, "I'm sorry, Mom."

These kids of mine! They know how to get to me, you know?

I hugged him, apologized for being snappish, and all was well. I thought about staying home from work today, but at some point I shifted into morning mode, and didn't feel sleepy anymore. I'm fresh out of paid time off, so it's just as well that I made it in to work after all.

The sun is shining. It's going to be a rare springlike day here in the deep south. My kids made me proud today - they know I'm human and flawed, and they love me anyway. I can't ask for much more than that.

The REAL Face of Autism

J-Mac strikes again.

Last night Larry King had another show about autism. To his credit, at least he's TALKING about autism, which is more than most people in show business do. The show was entitled "Autism: Solving the Puzzle." To be honest, my initial thought (especially once I saw that the young man everyone calls "J-Mac" was the featured guest) was...Nope. Not gonna sit through another feel-good show about "autism" - and by "autism" they mean high-functioning verbal kids and/or kids whose parents are mega-rich.

But David said..."C'mon...let's watch it." I agreed, especially since I saw that other guests were involved: Holly Robinson Peete, Toni Braxton, and Doug Flutie - all of whom have sons with varying degrees of autism.

Of course, the footage from Jason McElwain's amazing basketball game two years ago had to be shown, and everyone congratulated him once again. Holly's son, who is 10 years old, had apparently expressed a desire to meet the great J-Mac (who is now 19) - so there was also footage of the Peete family welcoming J-Mac over for a few hoops in the driveway. So far the feel-good meter is off the charts.

Toni Braxton then chimed in, describing how much better her son is. I didn't catch how old her son Diezel is, but she was careful to mention that he is doing very well "because I have been able to get him all the treatments he needs." Yes. Indeed.

Between the fawning over J-Mac and the oozing sweetness of Holly and Toni, I was really starting to wish I had decided to clean the kitchen or fold some clothes instead of watching...but I persisted, rolling my eyes and "hmph-ing" every two seconds.

Let me say this: I recognize that Jason McElwain has struggled. His mom was with him, and she briefly explained that he was rather low functioning as a child. It IS truly amazing that he developed such a command of language, and that he has risen to minor (or major?) stardom because of his miraculous basketball game. Yes, it's wonderful, and I suppose part of me thinks, "Well, maybe Stephen will make huge leaps like that," and of course I would be ecstatic. But once again, the suspender-wearing, guest-interrupting, patronizing-question-asking Larry King is the media ringleader in promoting the inaccurate fact that Jason's autism is all that autism IS. He said, "J-Mac is the face of autism." I was getting my dander up over this, until the next guest finally got a chance to speak.

"Joining us from Boston, the great football legend, Doug Flutie...Doug has a son with autism. Doug, tell us...what has J-Mac done for the autism cause?" Doug looked straight into the camera and said, "Larry, basically, J-Mac has brought awareness to the autism issue...like the Doug Flutie Jr. Foundation has tried to do." Wow. No fawning, no over-doing it with the praise... Now, I'm interested.

Eventually, Larry got around to mentioning that there are various degrees of autism, and then polled his guests to find out about their kids' levels. Of course, J-Mac's mom said, "Now, he's high functioning." Ditto for Holly and Toni (well, Toni said mid-to high). Then it was Doug's turn. "Dougie is very low-functioning. He is 16 now, and he can't feed himself, dress himself, or talk at all." I watched intently as Doug looked straight into the camera, quietly and calmly saying, "Hey, my son can barely function..." and I noticed something - the lines on his face, the fatigue, the sadness in his eyes even as he smiled and told about the joy his son brings to him every day, the wistful hope in his voice, wanting so much for his son to progress. The face of a parent who dies inside when his child struggles to get through a day, the smile that somehow combines happiness with heartbreak, the clenched jaw that is equal parts stubbornness, frustration, and anger...the child who is trapped inside his body, with a brain and a heart and an imagination, the child who is scorned or overlooked because he appears to be dumb, the child who hurts and can't ask for help...these are the faces of autism. I recognize these faces...I see one in the mirror every day, in my husband's face every day, and in BOTH my sons' faces...one wanting his brother to just get better, and the other that faces every day dealing with challenges that I may never truly understand, but with a smile that melts your heart.

There was pretty much no response to Doug Flutie's rather down-to-earth description, so Larry moved the show along. The next question applied to everyone was: "What are your goals for your child?" Well, J-Mac answered on his own. He wants to be an assistant coach, which will be difficult, as his mom explained, with the learning problems he has. Well, more power to him, I say. Holly Robinson Peete's son wants to play basketball like J-Mac. And Toni's son is excited about going to a typical peer's birthday party, and she just wants him to continue to improve. So Larry leans on his hand and intones, "Doug...I suppose Dougie isn't ABLE to tell you his goals..." Such sensitivity. [Michelle to Larry: You MORON.] Doug paused, and said, "Well, no, Larry. He isn't. But our goals for him just involve him learning to function better in his everyday life." Larry, in a patronizing tone: "Well, Doug...do you have HOPE?" [Michelle to Larry: You are an idiot.] And Doug smiled. "Of course we do, Larry. Of course we do."

The rest of Larry King's show was more of the same old banter: What IS autism? Can it be cured? What causes it? At this point Dr. Jerry Kartzinel joined the panel. Dr. Kartzinel is a name you may recognize as the doctor who helped "cure" Jenny McCarthy's son Evan's autism. I believe that Dr. Kartzinel is a good man, and a good doctor - if only every large city had one like him, and if only every family could afford the huge fees he charges. Dr. Kartzinel addressed the "Do vaccines cause autism?" question, and unfortunately allowed the other panelists to engage in a discussion of thimerosal and its suspicious role in this autism thing. That's not to say it didn't ONCE play a part, but it's not the whole story. Thimerosal has been removed from kid's vaccines, and kids are STILL getting autism. Something else is going on here, I have no doubt. Is it merely coincidental that so many kids regress after a big batch of shots? Probably not. Perhaps their immature immune systems can't handle such a toxic load. Toni Braxton actually made that point, and for that I will pardon her for her comment about being able to give her child ALL the treatments he needed.

Dr. Kartzinel pointed out, very appropriately I thought, that the "experts" who continue to insist that autism is purely a genetic disorder cannot account for the epidemic we're seeing. "There is no such thing as a genetic epidemic." Amen, brother. And the good doctor finished up his moments on the show with a profound statement that needs to be absorbed by everyone in this country. When asked if a cure is possible, he said, "There HAS to be. There HAS to be a cure. We cannot keep sacrificing 1 out of every 150 children to this disease." People need to HEAR that, and be driven by fear to DO something.

J-Mac's mom had mentioned several times that he has to "rehearse" for any public speaking he does. He had been coached well, and was very composed and did a fairly good job staying on topic when asked a question. Of course, he has written a book (well, who hasn't?) and his final comment was to thank everyone in America for buying his book. His mom smiled. It seems she and her son have gotten to be quite the travelers, going around the country so that he can speak at conferences and accept awards. He even won an ESPY for his amazing basketball performance. I know before you say it, reader, that I'm slipping back into that bitter place...but I am only human, and while I am too tenderhearted to begrudge this young man every bit of success he can muster, I do not think his face is the "Face of Autism," as Mr. King labeled him. He can be the "Face of High-Functioning Autism" if he likes.

But I dropped the "Face of Autism" off at school this morning, in 35 degree weather, without a coat because apparently today was not a coat day, walked him down the hall as he smiled at friends while flapping his hands, and left him in his special needs classroom to work very, very hard to keep progressing, one little step at a time.

I got to kiss that sweet face goodbye, though...so I'm the lucky one. :-)

Happy Birthday, Stephen

Today my baby is eight years old.

The child who wasn't "planned," born after a pregnancy that was full of nausea and bleeding from a low-lying placenta, the newborn who barely waited till we got to the hospital to make his appearance...that precious little piece of humanity has been with us for eight years now, and we are forever changed.

Unlike Kerry, who took his sweet time coming into the world (and he is still very laidback and easygoing), Stephen joined us with speed and urgency. Funny, that description still fits him today as well. I went from having contractions that were ten minutes apart to contractions that were two minutes apart after my water broke. We had to SPEED to the hospital and Stephen was born just over an hour later.

He was a good baby - he slept well and nursed well for the first few months. Then he developed reflux and had to take medicine for that. During his first year he would sometimes wake up wailing and crying (probably from gas pain) and it would take me a long time to get him calm. Still, he was fairly easy to care for during the day, and I reveled in my role as mommy to a two year old and a baby. Stephen learned to sit up at about 5 months, was babbling words (Mama, Dada, bye-bye, gone-gone) by about 9 or 10 months, and he walked at 11 months...he met all those milestones with no problems, and we felt comfortable and happy with our little family.

Sometime after Stephen turned a year old - maybe not until he was about 15 months old - I started to worry that he wasn't talking much more. In fact, when I thought about it, he wasn't saying the few words he had used frequently only a few months prior. I fretted and pondered this, but the pediatrician we had at the time reassured me: "He's your second child. They never talk as much as the first. Don't worry."

So, I tried not to...but by the time Stephen was 18 months old, I knew something was wrong. He never said a word. He would go into his room and play with one toy (one of those wooden bead roller coasters) for 30 to 45 minutes at a time, sliding the beads from one end of the toy to the other, one at a time, then sliding them back...over and over. He would take a toy truck, turn it upside down, and spin the wheels. When he wanted something, he would take my hand, lead me to the item, and put my hand on it, letting me know he wanted that book or toy.

I was secretly petrified. One night I happened to be at a bookstore by myself, and I wandered over to the parenting section. I saw a book about autism, and with shaking hands I picked it up. Even then, I knew. I flipped through, looking for some sort of concise description, and my heart froze when I began to read the so-called "red flags" of autism:

* Does not babble, point, or make meaningful gestures by 1 year of age
* Does not speak one word by 16 months
* Does not combine two words by 2 years
* Does not respond to name
* Loses language or social skills
* Poor eye contact
* Doesn't seem to know how to play with toys
* Excessively lines up toys or other objects
* Is attached to one particular toy or object
* Doesn't smile
* At times seems to be hearing impaired

Stephen showed 9 out of those 11 signs. He smiled, and he would often make eye contact, but every single one of the remaining statements described my child perfectly. I sat in the floor of that Barnes & Noble bookstore and cried like a baby. I read things like, "Autism is a lifelong neurological disorder." "Many children with autism eventually will be placed in institutional care." "There is no cure for autism."

Something inside of me shattered irreparably that night. I knew with a mother's certainty that my son had autism. I went home and walked into Stephen's room. I don't think he was in there at the time, but I remember sitting down heavily in the armchair. David walked in, took one look at me, and said, "What is it?" I looked at him, and in a voice I didn't recognize I said, "Stephen has autism." And I cried - for the child that I now knew might never speak, never play like other kids, never be "normal." We accepted the autism that very night, both of us...both of us knew that we had to deal with it and move on.

And we did. We had to jump through a few hoops - I found a hotline for kids at risk, called it, and a very helpful case worker helped me set up an appointment for a speech and hearing evaluation. I told her that we knew he could hear, and we also knew he couldn't speak - but regardless, this was the first step. We had to rule out a hearing problem.

I took Stephen to the first speech and hearing eval - and watched as cheerful women did their best to engage him. He stared at them blankly as they tried to get him to play with their colorful educational toys. They wrote furiously on their pads, and then told me that he had "some sort of speech delay." Really? Okay then. Hoop number 1.

In the weeks following we scheduled a hearing eval. I took Stephen to our childrens' hospital, and went with him into the hearing test booth. He refused to wear earphones (of course) and so we sat together in a chair while the technicians bounced sounds around, lit up buzzing toys in various corners (meant to draw his attention when he heard them) and other bells and whistles. Stephen sat resolutely in my lap, staring straight ahead. Even when the sounds got so loud they were bothering ME, he never budged. The speech and hearing professional told me gravely, "According to these results, Stephen has profound hearing loss." Really? Okay then. Hoop number 2.

Because David and I, having lived with Stephen his whole life and knowing that he could hear perfectly well when he WANTED to, insisted, we were granted the opportunity to have a test called an ABR (automated brain response) done on Stephen. We took him to a pediatric ENT who looked in Stephen's ears (with much fighting and difficulty) and said that he would sedate him, get any fluid out that was accumulated, put tubes in, and perform the test. We took Stephen a few days later and watched as he was given something to relax him, dressed him in a tiny flannel hospital gown, and watched as our child was wheeled to an OR to have these procedures done. You see, the ABR was going to measure his hearing capacity without requiring him to participate. An hour later a grim hearing professional came out to tell us that Stephen's hearing was "perfectly normal." Really? Okay then. Hoop number 3.

Finally, after jumping through hoops as impressively as well-trained poodles, a few weeks later a pediatric behavioral specialist came to our house to test Stephen. I watched as she gave him activities to do - most of which he ignored - and as she tried in various ways to engage him. After a couple of hours, she sat quietly at our table tabulating her results and charting the data. David, my mom, and I sat in the living room, silently staring at the walls, the TV, each other. Then she walked back into the room, took a breath, and said, "According to the test results, Stephen has autism."

My mom immediately cried, David maintained his serious look, and I felt myself sink a little deeper. There was no shock, no panic, no horrible realization. It was more like someone had just put a big iron padlock on a door that I had already closed tightly on my own.

Stephen was 2 years and 3 months old, and on that day in May, I felt his life was over.



I began to read everything I could get my hands on, and before long I came across a book that fell into the "I cured my child of autism" genre. It was a mother's story (and I'm a sucker for those) of how she changed her child's diet and rescued him from this dreaded disorder. I've mentioned before that we jumped into that notion with both feet, and I cooked and cajoled and tried to get Stephen to eat rather weird substitutions for foods he liked. We took him to the first DAN! doctor who did an EEG and told us he was having seizures, and started medicating him for those. We struggled to get urine samples. We took him to other doctors. We forced vile-smelling and -tasting anti-fungal drugs down his throat. We did more tests, all the while trying to pretend we saw results. But in the end, we didn't. We had traveled far and wide, spent thousands of dollars, and put Stephen through the wringer...only to discover that maybe this stuff didn't work. For some people? Maybe. For us, apparently not.

The years have passed...often turbulently, mostly chaotically, eventfully to say the least. Our sons have grown before our eyes. I would not trade one single moment, when I stop to consider it all. Even the nights of Stephen screaming, the times I've felt like I was going to pop my cork, the times I've worried and dreaded doctor's appointments, or haircuts...like it or not, simply MAKING it through those times has given me strength. I know that there isn't much that comes that I can't handle - I may not always come out feeling great, but I can make it. I often think about children like this one, like this most precious son of mine, who are born to parents who, for whatever reason, can't deal with things...and I think, "Who takes care of those babies? Who loves the ones who are sometimes almost unlovable?" It breaks my heart, but I rest in the knowledge that Stephen is surrounded by people who love him - by a mom and a dad who grit their teeth and push through the problems, by a shining, golden big brother with the patience and kindness of an old soul, by grandparents who do their very best...and this child of mine somehow works his magic on almost everyone he meets. Everyone at his school smiles when they see Stephen walk in...they rejoice with us in his triumphs, and they truly love this little boy who came so close to being lost. He has so very far to go, but he is growing and healthy, he reads and writes his letters, he sings, he dances, he plays, he hugs his daddy and laughs with him, he kisses me and rests his head on my shoulder...

Stephen is eight today, and it turns out that his life is far from over.

Straining toward hope

Thankfully it doesn't happen too often, but it happened Saturday night.

David and I both hit rock bottom at the same time. Usually we take turns, and that really helps situations to be a bit more bearable. When we both feel down, it's not an easy thing to deal with at all.

We decided to go out for dinner, and as I've mentioned on several occasions, that in itself is quite an undertaking. We split up - Stephen and I dropped David and Kerry off at Cracker Barrel (I had already told David what I wanted so he could order for me) and then we headed to the McDonalds right across the highway. Strangely enough there wasn't a long line at the drive-thru, so we were back at CB in about 15 minutes. And of course David and Kerry hadn't even gotten seated yet...so there we were, the four of us, standing in the overcrowded "store" part of the restaurant, surrounded by a million junky items and trying to explain to Stephen that we had to WAIT. I could see his brain working: "Mom is holding the bag with my food in it. Usually we walk right in, and I eat. This is a problem."

He started whining rather softly, but it quickly escalated in volume and intensity. The people closest to us in the store started with THE LOOK. He began pulling on my hand..."Lesss go! Lessss go!" I kept leaning down, hugging him tightly, and saying in a calm voice, "Buddy, we have to WAIT..." and doing the sign language for "wait." But it doesn't work. I started remembering other visits to Cracker Barrel, and the last several times Stephen hasn't had to do this kind of waiting...so he clearly doesn't understand why his mom is torturing him. In desperation I took him into the bathroom and turned on the faucet in the sink, hoping he'd play in the water. He did, for about 10 seconds. "Lessss go!"

We emerged from the bathroom and I told David, "Time to play the autism card," which means: go to the hostess, tell her what's going on, and pretty much beg for quick seating so as not to cause a huge scene. So he does, and it works. On the way to the table she told David that her cousin has autism, and that she understands perfectly. Thank goodness for small favors.

It's hard to describe in words exactly what the effect of 20 minutes of full-on, publicly displayed, loudly proclaimed autism can have on a person's nerves. But the four of us settled down at our table, I got Stephen's food out, and we tried to relax. The problem is that once the tension gets hold of you in a significant way, it's hard to shake it. At one point Stephen reached over and touched my arm, and I jumped a few inches out of my seat...my nerves were a jangled mess. But we made it though the meal well enough...no spills, and Stephen only tried once to escape from the table.

We made a trip to Wal-Mart, too, without significant incident...and we trundled home, mostly just glad it was all over. Once we got inside, David had to leave again because Wal-Mart was predictably out of Stephen's Pull-Ups...and as he prepared to go out the door to try another store, Stephen launched into a tantrum because he couldn't get all of us to "Go 'way!" from the living room - he tries to get us to leave so that he can sneak a tape into the non-secured VCR and fast-forward it in peace. Kerry left and went to his room, and I stood guard. As David left he said, "You know, all of this tension is going to have an effect on Kerry...I just don't know what it's going to be..." Right now Kerry seems very much a typical 10 year old boy...maybe a bit too forgetful and a bit too enamored with video games, but also extremely compassionate and fun-loving, with a sense of humor better than anyone I know. But, will it last? Is he being done irreparable harm by living in this environment?

I got Stephen calm, and ready for bed. Kerry came back to the living room, and we spent some time just talking, and I read to him from the Harry Potter book he's reading...and he was smiling and happy and the same sweet Kerry I know. After both boys were in bed, I spent a lot of time thinking about what David had said. We both know that our family life is far from the ideal...and yes, tension and stress seem to be an inevitable part of daily living. We also try very hard, though, to help Kerry through those times, both by letting him express how he feels (embarrassed, annoyed, tired) and by making time to do things just for him. But is it enough?

Later David and I were talking. We worry that when Kerry gets to be an adult that he will want to run far from the home he has known all his life - a home that has always included a little brother with autism, who messes up his stuff and seemingly gets away with it, who throws nerve-tangling tantrums, whose insistence on sameness brings about endless pre-emptive planning. I mean, who wouldn't want to get as far away from that as possible?

As the reality of that scenario began to sink into my consciousness, I was hit with a wave of despair, of pure and utter hopelessness. I felt like I was going to be forced to choose between my sons - do I keep Stephen in my care as long as I am physically able to handle him, and risk alienating my shining golden son who deserves every possible chance to develop into the amazing man I know he will become, or do I focus on Kerry's potential and "find a place" to put Stephen where he may or may not be cared for and respected as a person? It seems an impossible choice, and I felt like a knife was cutting into me just to consider these thoughts.

I went into the pitch dark living room, grabbed a few tissues, and let myself grieve. There simply was no other choice at the moment. Eventually I was spent, and I crawled back to bed. Mercifully my brain simply said, "No more," and allowed my body to shut down. There was no resolution, but I slept.

I woke up the next morning to the sounds of a quietly happy little boy, still in bed but perhaps talking to one of his stuffed animals. I went down the hall to the couch, and before long he came padding behind me, and climbed under the quilt. He snuggled close to me and we both slept for another hour. When I woke up the second time, the first thing I heard was the sound of birds in the tree outside our deck. I looked down into Stephen's face and had the rare opportunity to just watch him sleep. And then, completely unbidden, I was flooded with a calmness and a certainty that was completely impossible. I knew that we would make it. I thought of Kerry. I pictured him as he'd been when I walked past his room earlier...covered nearly to the top of his head, arms wrapped around his bear, and I knew just as certainly that he was going to succeed and prosper.

Now, before you go getting all misty and mystical on me...I don't attribute my feelings to a message or sign from God. I don't know WHERE it came from, or if it will last. Call it cockeyed optimism, call it a coping mechanism, call it certifiably nutsy behavior. I can't seem to totally give up on much of anything, really. Regardless, that peace and calm energized me. I realized that ultimately what I had done was make a choice. A choice between carrying around the boulder of dread and worry and despair, or reaching and stretching toward a hopeful future. Even as I type that I know that it's a longshot. Almost everything points to problems and worries...but to make it, to stay sane, to grab the elusive moments of happiness, I choose to believe that we will make it. That one day, we'll arrive at a point of triumph...battle-weary and scarred with the pain of a thousand exhausting days, but alive.

I'm straining and clawing my way towards hope...it's all I have.

(Dis)belief

I’m confused, and I hope writing this will help me figure out what I’m feeling.

Yesterday my mom told me about the accidental drowning death of the two year old son of a local radio personality. Any time a child dies, it’s heartbreaking…and even though I’m not a fan of the radio show the guy hosts (with a sidekick, of course) I spent several minutes thinking about how devastated the family had to be. Apparently the little boy slipped away from his siblings and went outside while his mom was in the shower, and drowned in the family pool. The dad (the radio host) was out of town and had to fly in after he heard the terrible news.

Now, when this radio duo first started their show here in Birmingham, I listened to them. They were down to earth and funny – at least to me at that time. I was probably 25 or so, and that was B. A. (before autism). Eventually the show became more popular and was syndicated in quite a few southeastern states, and, as a result, it also became more gimmicky and just plain stupid – bumper stickers galore and silly on-air games. The show popped around from one local station to another, and occasionally I’d see a commercial on TV, but mostly it dropped from my radar screen completely. I heard enough scuttlebutt to know that the two guys hosting the show had become very vocal about their Christian faith.

Which brings me to this morning.

I was curious about what format the radio show had taken this week – the little boy died on Saturday night – so I tuned in this morning as I drove to work. The first thing I heard was the dad’s voice, and I was surprised since I figured he’d take a long break after this tragedy. After a few minutes I realized that what I was hearing was pre-recorded; after a few more it became obvious that the father was in fact speaking (preaching) at his own son’s memorial service. The family attends one of the largest churches here in the Birmingham area, and I have no doubt that the service was attended by hundreds if not thousands. I listened in utter shock as this man who had lost his tiny baby boy a mere five days earlier preached and pontificated as enthusiastically as Oral Roberts or a sweat-bathed Jimmy Swaggart. This man’s son is DEAD…gone, vanished from his life, and he was not only in perfect control of his emotions, but able to preach as authentic a Southern Baptist sermon as I’ve ever heard. I listened for the inevitable and I wasn’t disappointed. To paraphrase him: “Now, some of you have asked me how I can stand here and do this, and to you I say that I can’t. But He [God] can. I am weak but He is strong.”

Okay. This is familiar territory to me. I was born and raised a Southern Baptist, and up until about 6 years ago was still very active in that life. I know that people of strong faith are meant to call upon it during the hard times, and to draw strength from it…and you know what? That still makes sense to me. Find a place, a storehouse of peace, and draw from it when you feel down or burdened. In my mind that does not, however, translate to preaching a sermon over the tiny body of your precious son. Where's the screaming and wailing? Your soul shredded and broken as you wonder how you're ever going to BREATHE again?

In short I was horrified, sickened…frightened by this man’s words. I have often observed to David as we sit watching the latest tragi-drama on CNN that people seem incredibly capable of appearing in the spotlight mere hours after losing a loved one. They stand there calmly, sometimes even smiling, while Anderson “Aren’t I handsome yet caring and serious” Cooper asks them inane questions like “So how are you feeling now that your [son/daughter/spouse] has [disappeared/been killed/been trapped in a coal mine]?” I got that same sense of surreal disbelief as the radio guy pounded the pulpit, demanding to know if people in attendance could handle what had just happened to his family…asking if they were “prepared” to give up what they loved most, since that’s what God did for us. He smoothly rolled out the platitudes about someday seeing his son again, and how there were certainly still “times for weeping” ahead – but he reiterated again and again that he was going to be fine, and that he knew that God meant for him to renew his commitment to sharing the Gospel, and to inspire others to do the same. Again, paraphrasing him: “On that plane as I was coming home, God told me that He wanted people to look at me, at my circle of family and friends, and wonder HOW we could go on and rejoice in this…He wants people to be amazed… If God had sat me down and asked me to give up my son, I couldn’t have done it. So He had to take him.”

WHAT?!!????

All I could think about was how I would feel if I lost one of my sons…all I could imagine was the grief that countless parents have felt at losing a child, and how utter despair would be the only reaction in my soul…it was sickening to hear this man basically telling me that if I’m unwilling to give up a child, or unable to immediately bounce back after a tragic loss that I’m not as good a person as he. If I lost one of my boys, I can’t predict how long I would be paralyzed by grief, and would do nothing but huddle in the fetal position in a corner. I couldn’t speak to anyone…or eat, or sleep. And he's OKAY with this? He's rolling with the holy punches?

I’m not saying this man didn’t love his son. I’m not even so far gone as to say that I don’t believe in a heaven, of some sort. You people trying to label me as an atheist…back away! I’m not even ready to admit to being agnostic yet. I’m just…confused. There, much better. Anyway…I DO understand the desire to know that people we love who die aren’t gone forever. I have lost beloved family members whom I have tucked away in my heart, and want to believe that they are “up there” and at peace. That comforts me, and that seems to me to be an appropriate but eventual place to come to after the other stages of grief have passed. About the only spiritual matter I can say I’ve come to believe for sure is that whatever religion we choose (or don’t choose) should be a source of comfort and protection…not something to be used to beat people over the head – especially if they don’t seem to respond to tragedy in the “right” way!

Now, more than ever, these words mean a lot to me.

We hold beliefs as a consolation
A way to take us out of ourselves
Meditation, or medication
A comfort, or a promised reward

Sometimes the spirit is too strong
Or the flesh is too weak
Sometimes the need is just too great
For the solace we seek
The suit of shining armor
Becomes a keen and bloody sword
(N. Peart)

Believing in something higher than ourselves – it can be a consolation. That may mean different things to different people, but that’s okay. Taking comfort when possible, peace from prayer or meditation, believing that our spiritual selves somehow live on after we die…I can accept those things without crimping or confusing my soul too terribly much. But how true is it that sometimes the “need is just too great”? Being told that God “allowed” Stephen to have autism, or that He “chose” us because He knew we could handle it? Sorry. That need is just too great, and there’s no solace in those thoughts for me.

The bottom line is ultimately this: I don’t understand it all. I don’t get how it’s all supposed to work, or even IF it’s all supposed to work. I know that there’s a part of me that feels moved by the great overwhelming peace of nature, or by beautiful music, or by a child’s face. I want to believe in something…a comfort? Maybe. A reward? Who knows. A suit of armor…to protect, to hold me up if I can’t stand on my own? Sometimes.

Today I heard a man proclaim that God took the life of his two year old son to teach him to be a better Christian. That “keen and bloody sword” kind of faith is frightening to me…and in my most humble opinion isn’t what spiritual life is about. Not even close.