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.