September 26th: Blogging For Kids With Disabilities.

Last week, I was invited by Laura of 11D to join a group of bloggers who are parents of disabled children and who are devoting today's post to writing about our kids and our experiences in the trenches. I agreed to come aboard, so here's mine.

Alex started kindergarten on August 29th at the local public school, 20 days after he turned six years old.

The six years of his life can be divided amost evenly into two parts: the first three years when I thought something was wrong with me, and the next three years where I still thought something was wrong with me, but now I also thought maybe something was going on with him, too.

The first time anyone ever asked me what was wrong with Alex, we were at the beach on our first family vacation. Alex was eight months old, and was lying on a blanket on the floor of the beachhouse. He was on his stomach, vigorously kicking his legs, and had been doing so for twenty minutes. One of the children belonging to the family we were staying with walked over to Alex's blanket and stood over him, watching Alex kickkickkickkick.

"What's wrong with him?" he asked, puzzled. "Why does he always kick his legs like that?"

"Nothing's wrong with him," said my sister. "He just has high energy."

"I've never seen a baby do that before," replied the boy doubtfully.

My sister continued to pooh-pooh him, but in the back of my mind, a small, quiet voice said clearly, "I've never seen a baby do that, either."

It turns out there were a lot of things Alex did that I'd never seen a baby do, and as time went on there were a lot of things Alex did that I'd never seen a toddler do. After he started walking I spent the next two years trying to get the boy to act right. I couldn't do it. I couldn't get him to stop breaking everything he got his hands on. I couldn't stop him from coloring on the walls, I couldn't stop him from unbuckling his carseat, I couldn't get him to use the potty, I couldn't get him to stop dumping shampoo onto the floor or plugging the bathroom sinks and flooding the upstairs, and worst of all, I couldn't get him to acknowledge my cries of "No!," even when he was darting toward the street or trying to stick his hand in a roaring fire. It ended up being easier to lock all the bathroom and bedroom doors, and remove all the furniture from his bedroom and the playroom. It was easier to buy board books he couldn't rip up, and easier to let him have a sippy cup longer than he should so he wouldn't pour whatever he was drinking onto the keyboard. If he was warned in advance not to exhibit a particular behavior, it was like handing him an engraved invitation to do exactly that.

I became an object of smirking derision among our playgroup and the object of disappointment among our immediate family for my constant failure at reining in my child. It was assumed that I never bothered, that I was lazy, that I put my job first, that I didn't love him enough, that I spoiled him too much, that I was too permissive, that I worried too much about his feelings, that I didn't worry enough. And since we're being honest here, I believed all these contradictory things, too, and often wondered if there would come a day when I'd realize that I couldn't crack his impenetrable shell and figure out how to help him come around.

And everybody from bag boys at the grocery store to strangers on an airplane gave me instructions on how to get Alex to comply, and most of the time they wouldn't believe their suggestions had already been tried and had bombed. Often I just went along with them, because I knew that the quicker I gave in, the quicker it would fail, and the quicker they would wash their hands of us and go away. Before they'd go they all seemed to be in agreement that raising my child was no problem, if they were the ones doing it, and not someone obviously too clueless and selfish to do things their way.

By the time I was heavily pregnant with Christopher, the looks I was getting from the teachers at Alex's new Montessori preschool were clear: Two? You can't even handle the one you've got. And of course, I had those doubts, too.

He was expelled from the Montessori two weeks later for behavioral issues, and while he finished out the year at a lower-rent preschool, his kindly teacher, Miss Nancy, suggested that we have him tested for ADD.

"I've been teaching preschool for 25 years," she said, "and he's a textbook case."

At his three-year checkup, I asked his pediatrician, The World's Hottest Muslim, if she thought he had ADD.

"He's on the high end of rowdy," she said, "but I wouldn't call it ADD just yet."

We took him to a second opinion, the first of the many, many professional opinions we were to get. The second pediatrician recommended having him evaluated at Tuesday's Child in Chicago, an early-intervention preschool for children with behavioral disorders. After being examined by four social workers and a child psychiatrist, Alex was given his first official diagnosis: Sensory Integration Disorder. For the next two years, Alex went four days a week to Tuesday's Child, at $400 a week, $400 that insurance did not cover. He also went two days a week to occupational therapy at $240 a week, again, that insurance did not cover. Every morning I loaded him into the car and we drove two hours into the city through rush hour traffic so he could spend 2 1/2 hours in a preschool where he'd have his own personal social worker next to him the whole time while he played with children with speech delays, anger management issues, sensory issues, autistic children, and children who were victims of lead poisoning. Once a week, Steve and I met with our own counselor to learn techniques that would help us guide Alex toward more successful behavior. After that, we'd have group therapy where other parents would discuss their children's horrible bedtime behavior and violent headbanging episodes. I shared my stories of Alex smearing poop all over the walls or licking the dirty linoleum on the kitchen floor. It was nice to have an audience that thought it was funny and found entertainment in trying to top everyone else's tales. It was bizarro playgroup, where the mommy with the wildest kid won.

Tuesday's Child eventually came to an end when we ran out of money and had to declare bankruptcy. It would be incorrect to say that Alex's uninsured medical bills were responsible, but it would also be incorrect to deny that it didn't add to our financial troubles.

We turned to the public school district and submitted him to yet another round of testing with yet another batch of social workers. By this time, we were on public aid and were out of options. We had spent every scrap of free time we had going from doctor to doctor, from psychiatrist to occupational therapist to psychologist to pediatrician to pediatric ophthomologist to oral surgeon, the last two when we thought maybe it was his vision or his adenoids that were causing the trouble (They weren't.) We went to doctor's appointments like some families go to Little League games or soccer practice. The entire family was consumed with it, every day, all day.

The social workers at the public school did exactly what the other parents at Tuesday's Child warned us they would do: they found him low normal. This meant no treatment, and he would have to struggle through school with C's and D's and letters home and more instructions on his behavior and more concerned meetings with teachers until he became permanently discouraged and dropped out. I didn't know what I could do at this point, but I couldn't settle for this.

"What do I have to do to get you to give him the help he needs?" I asked them.

Eventually, after listening to their protestations and telling me how happy I should be to hear their diagnosis of normalcy, they told me they would honor a written letter from The World's Hottest Muslim.

We had Tuesday's Child fax their records to her, and , after she reviewed them and spoken with the psychiatrist she faxed a letter to the school recommending occupational therapy, social therapy, fine motor work, and speech therapy. She also referred us to yet another child psychiatric group at Children's Memorial Hospital in Chicago that would take Medicaid.

At Children's Memorial, he was first diagnosed by the psychologist with ADHD, then Asperger's, then, finally, PDD, which is the diagnosis you give to children when you don't know what the hell their problem is.

Finally, two weeks before kindergarten, we met with the psychiatric board and agreed to put him on Ritalin, per their recommendation. This decision was not made without a certain amount of crow-eating, as Steve and I both felt that too many little boys were on Ritalin instead of just acknowledging that they need more exercise. And one of us was dumb enough to put it in print and write about it on a web log.

But here we were at long last, clutching the last straw. We had taken the boys to RJ Grunts for lunch, and were quietly talking about Ritalin. I was willing to try it, Steve less so. As we sat, Alex leaped up, ran to the salad bar, and started scooping up black olives with the serving spoon and shoving it in his mouth. It was as if he did not even hear us yelling at him first to come back, then to stop, STOP! He would not stop eating big handfuls of black olives until Steve reached him and jerked him away, prying his fingers from around the spoon.

It could have been funny if it wasn't so humiliating. Or if we hadn't bankrupted ourselves trying every method possible to get him to cease exactly that behavior, short of wrapping him up in duct tape or lobotomizing him (Oh, or taking Ritalin.)

Christopher, raised in the same home, but with virtually no financial resources and more tired, more permissive parents, does not mosh into restaurant salad bars.

Steve yanked Alex back to the table and scolded him. Alex rolled his eyes around in his head, flapped his hands, and replied, "Mrs. Puff - I do have an antenna under my hat!"

Steve looked at me. "Okay," he said. "We'll try the Ritalin."

The first day he took his recommended dose of two pills, he lay immobile on the couch literally all day long, completely dragged down and crankier than I'd ever seen him. The psychiatrist recommended we cut his dosage in half. On the half dose, he drew a picture of a house with himself, Christopher, Steve and me all standing outside. The sun was yellow, the grass was green, the door was white, and all the happy stick figures, three bald and one with a brown ponytail, were waving.

Before the Ritalin, his drawings had almost always been feverish monochromatic purple or black scrawls, sweaty with energy but no apparent thought behind them. The following week he began reading. The week after that he brought home a sheet of arithmetic he had completed. All the answers, except for one he had accidentally skipped over, were correct.

The week after that he brought home a friend, a Pakistani boy named Haaris who greeted me when I opened the door. "I am a Muslim," he said gravely. "I do not eat gelatin."

"I guess I'd better put away my ham-flavored Jell-O, then," I said as he pushed past me to join Alex in playing with trains.

And when we had our first Parent-Teacher Conference, his teacher told us when he was called out of her class for therapy, she challenged the instructional teacher over it. "I couldn't believe he needed special classes," she told us. "He's one of my best students."

For six years I've cried over my inability to make an impact on Alex, and over my mistakes, both real and imaginary. I've cried over people telling me all the things I've done wrong, and over all the useless times I yelled at him or spoke harshly to him about his compulsive behavior. I cried two weeks after the feature about us was published in the Chicago Tribune, when I discovered we were subsequently featured on a "child free" forum as proof for the need for forced sterilization, and of course, I've cried over not being able to do what mothers are supposed to do: make everything better.
But I wasn't used to crying like I did when I heard his teacher tell us what a pleasure it was to have him in her class.

Comedian Caroline Rhea said that instead of saying "Go fuck yourself" like New Yorkers do, Southern people instead say "Bless your heart." I've been bearing that in mind now that the newest crop of criticisms have started to arrive from those who don't approve of Ritalin or those who think, like I used to think, it's just a crutch for lazy parents.

After six years of watching Alex get rejected by peers as he whirled and shrieked around them, after watching him get expelled from school and listening to the parents of his classmates express relief to my face that he was away from their children, after being clucked over by adults of all stripes, my son deserves this first taste of success. And it looks like it's going to be Ritalin that gives it to him after all.

And if you don't approve of that, well, bless your heart.