Hope needed: Part Four

Flashback July of 1994 teacher wrote: “Jamey stayed back from the field trip because of uncontrolled self-injurious behavior.” A month later, the speech therapist wrote: “Jamey’s profoundly delayed in all communication. Self-injurious behaviors are a major concern” and the aide told me “The hitting got so bad, I had to leave Jamey alone and let him just hit his helmet.” Meanwhile, the school praised the wonderful classroom for autistic children. And I’m sure it was, but it wasn’t for Jamey. One afternoon, Jamey came home with half his hair wet with blood and light purple marks on his chin. “What happened?” I asked bus driver. “I don’t know,” she said. “That’s how the school put him on the bus." I stormed the educational office. Hounded them. In July, the district suddenly agreed to send Jamey to the non public school.  “You’ve wasted time,” I told Bowmen. “Jamey suffered six months in a bogus classroom because of you.” Bowmen just stared blankly ahead and stretched with the nonchalance of a napping feline. “What did you expect me to do?” she said. “I had to follow procedure.” “Procedure?” I asked. “What kind of procedure forces a self-abusive autistic child into an inappropriate classroom?"

                                                                               ***

Eleven days passed without self-abuse. I knew better than to relax. Of course, we hoped the spontaneous lull would last. But, like an easy winter followed by a summer of thunderstorms, the lull ended. As self-injurious behaviors burst onto the scene, my arms ached from constantly wrestling his arms away from his face. What now? I pondered the mental list of pre-self-injurious suspects. Diaper and pants weren’t too tight. Ears weren’t red. Room was quiet. Palpitations from head to toe revealed no bruised, red or sore spots. All right, keep thinking. Is he tired? Dizzy? Headache? Sore throat? Stomach pain? How would I know? He can’t tell me. I reminded myself it could be nothing identifiable. Then I pried my fingers in his mouth, a move that almost cost my thumb, and felt a loose tooth. Normally, loose teeth didn’t cause a problem. The tooth would simply fall out and he’d spit it out. It was a miracle he’d never choked on a tooth. One, two, three wiggles and I plucked the tooth out and he seemed immediately relieved. Underneath, another tooth sat like a boulder.

Summer school was a trailer filled with glue, laser printers, paper shredders, mini-staplers, rulers, rubber bands and VCR’s, tucked away in the back of an elementary school. For three weeks, six severely students huddled on a patch of rug in the center of the room while above, a cracked ceiling smelled as if Willard and friends had expired and decomposed. The teacher was a young East coast transplant majoring in History who chastised the kids (two with severe cerebral palsy) when they didn’t clap during a hand puppet show. I regret leaving Jamey in that mess. If only I could rest, I had told myself.

Around the second week of Jamey’s summer school, the answering machine started flashing. First message, from his teacher: “Jamey slapped and hit himself all morning. He’s worn his helmet most the day. At lunch, wouldn’t hold a spoon. Fingers bruised. I was wondering if he slammed them in the door at home. Oh, and he got a bloody nose. I’ll send his shirt home in a bag, but I think it’s ruined.” I kicked the answering machine. “His fingers are bruised because he’s been hitting his head in your classroom!” I shouted. The second message, from a limited English-speaking aide: “Even when mouth full, and more coming, hits self.” End of messages.

During late night with Letterman, I decided to review the past four years of Jamey’s educational, medical and psychological reports. As I lay on my stomach, sipping Syrah, I read reports, summaries and summations, all of them blending into one chronological ache. Nearly every report was the same. All documented Jamey hit himself. Not one  of dozens of "professionals" offered concrete solutions. It seemed I should find the solutions. Dizzy from  the pain and confusion of wondering WHAT could help and where to go and how to get it,  tossed the papers on the coffee table and trekked robotically to the garage. Without much thought, I took a screwdriver from the tool chest and chiseled it into my legs.
                                                                          ***

The new school was a welcome change. Great teachers. Great staff. All tried hard. A few months after Jamey had arrived, the teacher wrote, "Originally, tantrums were so disruptive he was taught outside the classroom in the hallway. Classroom behavior is not random. Waiting periods elicit tantrums. When agitated, brief tasks followed by massage, swinging and rocking calm him. He loves to take walks and listen to music. He shows no interest in toys.” A few weeks later the behavioral specialist wrote: “Self-injury occurs when Jamey is unhappy or frustrated. It involves blows to facial and head area. Re-enforcements include edibles, movement-oriented activities and sensory integration. Deep pressure, swinging and rocking calmed Jamey down quickly when he was upset, we utilized these sensory motor activities whenever he became self-injurious. Although, occasionally after sensor motor activity Jamey was able to complete a task, the rate of self-injurious behavior started to go up until after two weeks. Jamey screamed and hit himself when we stopped the sensor motor, manipulating us to provide sensory therapy all day. Medical precautions include uncontrolled self-abuse increasing seizures.”
                                                               ***

A school occupational therapist advised intense sensory therapy. I started with tactile therapy, which included fitting 400 thread count Egyptian cotton sheets around a spongy, foam mattress pad and soft pillows, since he was prone to sleep on his stomach. Next, I experimented with textures: yogurt with cornflakes; scrambled eggs and red bell peppers and tuna with bran flakes. “Maybe he’d like these,” announced Mark, holding up a box of Christmas lights. “Great idea,” I said, as Mark strung the lights eye-level around the room, transforming the room into a holiday festival. Slowly, with fingers poised in his mouth, Jamey scanned the room, his eyes gleaming at the curling colors. “AAAh, AAAh, AAAh,” he laughed and bounced on his bed.

Jamey slept on the bottom bunk, he often stared at the metal bars of the top bunk’s mattress. Had we lived in the 1600’s, I would’ve tracked the great illusionist Andrea Pozzo, but the best I could do was slip illustrated panels from pieces of a giant floor puzzle between the bars and create a 21^st century desperate mother mosaic. For sound therapy, we played Baroque and the Spanish guitar sounds of Andre Segovia. And I bought an aromatherapy diffuser. Filled it with cedar wood and lavender scents, which provided olfactory stimulation. The renovated room was a safe zone for Jamey. It didn’t cure self-injurious behavior, but it kept his mind occupied for longer stretches before he thought about beating himself.

I started giving Jamey Dimethylglycine (DMG) B-6 and Magnesium. One hundred forty
 bucks and little improvement later, there was scant reason to continue. A website touted
super nutritional powdered drinks for autistic kids. The powder smelled like fermenting Fruit Loops and tasted like chalk. Twice, Jamey gagged and spit it on the floor. A third attempt elicited self-abuse. An article about treating autism suggested eliminating barley, milk, wheat, rye and oats from the diet. As if a cruel cosmic joke, this too didn’t help.

Research showed higher fat diets reduced seizures in some children. I began drizzling olive oil into his foods. This, by way of some small miracle, had a positive effect and actually slightly reduced seizures. It was then I began to consider because seizure medication can affect liver, foods high in Beta Carotene (carrots, cantaloupe, sweet potatoes and squash)—which protect liver—were critical.  I’d read a single meal could change brain chemistry. Could that explain Jamey’s voracious appetite?  Looking back, I am disgusted at my ignorance and the ignorance of others. Did it occur to us that maybe obsessive eating wasn’t a behavior, but rather a biological need to supply a chemical balance in an otherwise imbalanced brain?

 

I’d read seizure medication blocks micronutrients. Was Jamey’s constant hunger a way to recoup lost nutrients?  Still another explanation for Jamey’s love of eating is the sensory experience: Aromas spilling into his nose from pots and pans. Sitting down and watching food arrive. Chewing. Swallowing. Condiments and spices. People talking in close proximity, attending and accommodating his every delicate need. Since Jamey doesn’t collect cards, bang drums, bounce balls, paint flowers, watch movies or write essays, food may be his amusement, comfort, relief and recreation. To everyone’s amazement, Jamey has never had a weight problem. In fact, while he’s tall for his age, he remains slightly underweight. This concerned me enough to have Jamey tested for parasites. Tests were negative.

                                                                 ***
As autism awareness increased, children diagnosed with the disorder skyrocketed. This hurt children like Jamey, because soon, ten-year old introverts who’d been ice-skating and winning spelling bees—were now labeled autistic. Soon, an entire industry arose from the epidemic. Special education enrollment soared. Regional Centers grew. Hospitals hired autism coordinators. Autistic treatment centers sprung up. Autism specialists replaced behavioral specialists. Autism groups and websites exploded. But still, nobody could figure out how to stop self-injurious behavior in autistics outside of complete sedation or restraint.
                                                                     ***
In addition to expanding autism spectrum, there is no shortage of autistic remedies. From avoiding certain foods to megavitamin therapy and Hyperbaric Oxygen to riding horses and applied behavioral analysis to SSRI's and SNRI's, the search for treatment is like any other search for treatment: It's a gamble. Just ask researchers, who pour over thousands of theories daily. It’s enough to drive you insane. But you can’t give up. It may take years of complex analysis and random trials and errors, but something, at some point, will help. At one point, it seemed everyone had an opinion about Jamey’s purpose in life. A relative suggested I was ‘appointed the task,’ because God only gave ‘special children’ to ‘special people’. Though when I pondered our situation the word special didn’t come to mind. Instead, words like “mind-blowing” “idiotic insanity”, and “why the f--- is this happening?” did. And of course I encountered people who believed everything they saw on television in magazines, as in the latest FAD that advocated standing in front of your autistic child and copying their behaviors. Now imagine doing this. You’re sitting there punching your head while the child punches his head to show him-- what? You’re compassion? Support? That you understand his inner struggles? Some people just don't get what treating severe autism and self-injurious behavior entails. You don't apply New Age feel good--it's a simple cure rooted in your mind philosophy to this kind of madness and expect everything to just go away. You have to apply serious, research based, clinically proven effective methods to treat this craziness, or be blessed, I guess, to get a rare MIRACLE and have God Himself stop the torment. Just ask anyone else in the world who has lived this, if you can find them. Most are so beat up from living with this, and finding no hope, they probabaly aren't even talking anymore. Those are the people I wish I could find and tell them, there is hope. No matter HOW LONG you've suffered, most importantly, your child has suffered, there is always hope. It doesn't seem like it when you're in this hellish nightmare, but there is always MORE to do. More to discover. I don't blame anyone for giving up. I've given up plenty of times. And then kicked my ass in gear to get up again.
                                                             ***
Chiropractor therapy was challenging in the way subduing a PCP patient is challenging. It took three easy listening songs to finish before the Chiropractor and I could unpin Jamey’s arms from the waiting room floor. It took another song before he could adjust Jamey’s back and neck. By the end of twelve weeks, the Chiropractor said: “Consider this a gift,” and refused payment, though I think it was his way of saying get out and don’t ever come back. Back and neck adjustments didn’t eliminate behavior, but I do recall for a few days after each treatment, Jamey was more relaxed, and even limber.                                 

He's Hitting Himself: Part Three

I purchased balls (like the ones in the ball pit at McDonald's)  from a special education magazine. Thousands of yellow, green, blue and orange plastic balls arrived by mail. What would I put them in? A kind store manager from Albertson’s gave me a giant cardboard box. When I placed Jamey inside, which seemed more a ball tank, he sank to bottom and let out a muffled cry. “All right,” I said, lifting him out and lowering him back down. Finally, he smiled, spread his hands over the balls and lay still. Taking a deep breath, I relished the unbroken, moment of tranquility.

A neurologist prescribed the splints, but nobody instructed us how to use them, and I hadn’t asked. When the splints arrived, my future husband and I stared at the deflated plastic tubes and wondered how to put them on Jamey’s arms. I figured it out and after they were on it was the most awkward sight. Jamey’s arms looked like one of those inflatable characters in the Macy’s Parade. Off balance, arms sticking straight out, waving as the float cruised through the crowds. Jamey’s sister wasn’t too sure about all this. “How is going to pick up food with his fingers?” she asked. I wasn’t sure. While wearing the splints, Jamey tried to hit his head, but soon realized he couldn’t bend his arms and gave up. At last, he was safe, it felt a building was lifted off our chests. A small victory. Like the honeymoon period in an abusive relationship, where silence is sweet and short-lived.

In March of 1993, the school transferred Jamey to another class. “Why was he moved?” I asked the principal. “His teacher complained Jamey’s head hitting interfered with her teaching,” she said. “But I’ve never seem him hit himself.” I do not recall responding to her statement, given it was reported in nearly every DAILY notebook the teacher sent home, that he HAD BEEN HITTING HIMSELF daily.
                                                                   ***

I returned to Jamey’s pediatrician for help, he referred us to another child psychiatrist. “Self-mutilating behaviors are very difficult to treat,” she said, standing beside a wall of degrees. I suppose I had high expectations.

                                                                         ***

A week before summer break, the teacher wrote: “Jamey gets more self-abusive when I work with him. He did a great deal of head hitting today.” I again phoned Dr. Crane. “Tell the teacher not to give into his demands or escaping behavior,” he advised. I didn’t know what escaping behavior was. And neither did the teacher. The teacher wrote back: “Jamey had a tough day. His ears bled.” I phoned the school. “I tried different techniques today,” said the teacher. Ready and willing, pen in hand, I asked her to explain the techniques. “Well I’ve selected activities where Jamey has to complete a task.” “What task?” I asked.  “Oh, I have to go, one of the students fell,” she said. “ I’ll let you know how it goes.” “Can you give me at least one…” Click.  Later she sent me home a note that said: “Jamey sat in swing today. Very happy.” What? None of this makes any sense. Not the hitting. Not the professionals. Not anything. Why are so many specialists so ineffective with Jamey? Why can't I find something to help? How will we survive this endless nightmare?

Frustrated, I sent Special Ed. Director, Bowmen a letter: “The evidence is overwhelming Jamey isn’t in the right educational placement. I can’t keep reading he’s punching himself without anyone finding ways to stop the behavior. I’m trying everything I can. I’m one person. The school has an army of people to think about this. Help!”  My message was ignored. Nobody from school phoned, my request probably tucked away in some file with summer vacation hot and heavy on every educator’s mind. 

                                                                     ***

1993. After my son Michael was born, Jamey’s self-abuse remained as common a part of my life as breastfeeding, cooking and cleaning. As I shuttled Melanie to and from soccer camp, the familiar Smack. Smack. Smack, came from Jamey’s corner of the car. Melanie, seven years old now, threw off her seatbelt and leaned over the front seat. “Stop hitting your head Jamey!” she yelled, a torment spreading across her face. Hysterically, she tore off her cleats, removed a soccer sock and tried to tie his wrists together. Jamey broke free and kept hitting. “Stop it Jamey!” I screamed and swerved off the road and into a bike lane, gravel spraying the side window. For several minutes, we were crumpled inside the vehicle like bees in a hive battling a pair of intruding hornets. I played classic music and massaged his hands. By the time he calmed and we could drive again, I had forgotten where we were going.  

                                                                ***

It's midnight. Jamey awakes and is punching his head. I slip an arm through the plastic and inflate the splints. Whoosh… out comes air. He’d bitten a hole in the left splint, which meant he could hit himself with his left fist—the one that did the greatest damage. You’ve got to be kidding!” I yelled, as I watched the splints deflate. Fists still flying towards his head, I lead Jamey around the living room, securing his hands and trying to soothe him. Had I not spent hours in the gym and long nights, talking to God, I may have jumped off a bridge.

It seemed a century before new splints arrived. But new problems arose. With new splints, Jamey began bending his elbows, leaning his ears into fists and cutting off circulation. As if that weren’t bad enough, he again bit and popped the splints. I began listening to country music. During the splint season, when we all felt like we were splintered, Melanie (his sister) spent a lot of time coloring behind the door of her room, as if she’d resigned herself to taking a back seat to Jamey’s behavior. And as we sat inside that cramped apartment, reeling in another feckless plan, Dr. Crane, the  behavioral specialist who had iniitially suggested we try arm splints to stop Jamey from punching his head, never inquired about the outcome of his behavioral advice.

                                                          ***

I had left several messages with Crane and had not heard back. He was coming out of his office, when I caught him by his mahogany briefcase. “What do you want us to do?” I asked. Coasting through my questions, he pushed high speed ahead, as if remembering a deadline.. “Uh, yes. About Jamey’s deflating splints and him curling his arm.” Caught in thought for several seconds, he finally suggested: “Try wooden splints.”  I phoned medical supply stores, searching, for what appeared to be, the world’s sole request for wooden splints. After we had Jamey measured and fitted for the wooden splints, Crane updated the behavioral plan: “Put wooden splints on in morning,” and “Take wooden splints off at night.”  Brilliant. I wonder how many hours he claimed for so few sentences.

Dr. Crane was soon replaced--it seemed these specialist were always coming and going___ with a sharply dressed behavioral specialist who wore spiked heels and men's suits. In a January report, she wrote: “James was referred for an in-home behavioral consultation by Dr. Sean Crane, PH.D of the San Diego Regional Center. Targeted behavior is self-abuse. Jamey hit his ear and side of head with closed fists…resulting in bruises on his head, and cuts with bleeding on his ears. Mother obtained splints from neurologist to prevent further injury. Dr. Crane, spike heels boss, finally wrote an intervention plan for splints…Since implementation of the program the behavior has decreased, but it has not been eliminated…(Behavior) occurs 2x’s per hour and only 3-4 hits before cessation of episode. Behavior occurs more frequently when James is ill, desires or refuses something…James makes some vowel sounds but no speech. He comes to adults to be picked up and hugged on occasion. James enjoys outdoors and loves being in the swimming pool. He is attracted to toys with lights, delights in water play and likes to chew objects. Shows occasional interest in music. Jamey needs to be taught activities requiring the use of two hands simultaneously… An occupational therapist could design a behavioral shaping program for home and school to reduce self-injury… Thirteen home visits and one school visit have been made.”  It was unclear what each home visit cost the state, but we knew it was costly to Jamey, since no effective help had been provided.

                                                                         ****

I once phoned a University that studied children with autism. Surely, they’d find Jamey’s case interesting. “I’m sorry,” an intake screener told me “Self-injurious behavior requires extensive analysis, documentation and treatment modalities.” Flabbergasted by her unapologetic candor, I hung up. I phoned another University. Again, the screener seemed uninterested in a case that didn’t have a direct and immediate bearing on a positive grant flow.

A new psychologist, Aubrey, on board, suggested something called "extinction method" where you are supposed to "ignore" the behavior. “We tried that, many months ago,” I said. “It failed.” “You probably didn’t do it long enough.” How long is enough? “But can we just let him hit himself?” I asked. “A few days of hitting is better than a lifetime,” Aubrey said.  “Jamey’s too young to do damage.”  Young, ignorant and trusting professional advice, I was instructed not to intervene if Jamey hit himself or to “reward the behavior.” 

The first few days of extinction, Jamey clobbered his head so many times we all thought we'd go mad witnessing it.  It was torture. Finally, I couldn’t take it. I slipped his soft shell helmet over his head. Melanie retreated under her bed, where she read books and listened to Boyz 11 Men on her Walkman. I often dreamed of soaring out our second story apartment window and crashing onto pavement. Mark did what any sane fireman would do: He worked a  copious amount of overtime.

                                                        ***

The extinction method attacked the very core of motherhood, evoking feelings of helplessness to protect your child while at the same time, confusion, that this strange technique could help him. Day after day, the persistent image of Jamey smashing his head burned into our brains. Should we stop this intervention? Will it work? Should we just feed him what he wants? Let him take baths all day? Pull him out of school? Had viewing self-injury as a behavior, rather than a danger or threat limiting our perspective, our ability to protect? As the pounding sounds echoed on and on, even during moments of reprieve, we still heard it.  So hard were the punches, a dimple had emerged on his cheek. Tissue damage. Oh, then, yes, then, I felt rage at Aubrey who seemed to think Jamey was too young to hurt himself. Unsatisfied with Jamey’s progress, I phoned Aubrey. “His behavior is getting worse,” I said. “How can we just let him keep hitting himself? I’ve introduced soft toys and repeatedly lead him to the pictures on the refrigerator, but he’s only agitated. Constant head punches. He seems happier when left alone. I see no progress”  “Hang in there,” said Aubrey. “If you stop the therapy now it won’t work.” Well, OK Aubrey, you were the professional, with your PH.D in behavioral psychology, a woman who would later go on to run a popular autism treatment center.

Finally, in the broiling heat of August, a cool miracle happened. After five weeks of adhering to extinction method, Jamey stopped hitting! Almost immediately, he began making stronger eye contact, sleeping sounder and laughing more. Had the unconventional behavioral approach been the cure we so desperately desired? “You have a window of opportunity ahead of you,” boasted Aubrey. We re-introduced the picture communication. Still, he tried to eat the pictures. No problem. We put books in his hand, pointed to the pictures and read. I remember stopping and staring at his bruised temples and lacerated knuckles. A bitter reminder of the prior weeks he’d suffered, but was now, hopefully cured. How could God have allowed such inhumane behavior? Battling mixed emotions, I remember placing Jamey on a polka dotted blanket where I had laid a Xylophone and a Mr. Potato Head. I handed him Mr. Potato’s nose. It went straight into his mouth. So, I placed a music stick in his hand and, together, we hit the Xylophone. Jamey titled his head in brief amusement, then ran his fingers across the colored keys. This was exciting. Perhaps he liked the sound.

This went on for some time, Jamey tilting his head and listening to the sounds. The ensuing days were like a beautiful dream.

Two weeks after the new school year began, the beautiful dream ended when screams and thuds shocked us from weeks of unbroken sleep. As we dashed into Jamey’s room, we found him upright in bed, thrashing his fists into his temples. “No! No! No!” I screamed in angry astonishment. Mark reached for Jamey’s hands. “Quit hitting yourself,” he said, his eyes brimming with tears. Standing half-hidden behind her door, Melanie appeared. For the next several minutes, Mark and I wagered Jamey had only stopped hitting himself because fatigue and emotional drain had overcome him--not because he made a conscious decision to stop hitting. “It’s almost as if when the wounds healed, he felt good enough to resume the beatings.” I said. The hopelessness we all felt had become so familiar we could find no words of comfort. Years later, I would read extinction method was for autistic children with mild self-injurious behaviors, and never intended for children with severe self-injury.

I had never heard about non public schools. According to special education law, non public school placement is for students who can't be educated in programs available in the local school district. The first non public school visited was Stein Center in San Diego, CA.  It was the first time I witnessed children similar to Jamey. Even better, the staff showed a sincere interest in James and said they’d love to work with him. “We provide a 1:1 staffing ratio,” said the Director, which meant I wouldn’t be battling for a one to one aide. Also on site was an after-school program called REC, though it wasn’t clear if Jamey could attend. Stein--a school specializing in behavioral challenged autistics, the most obvious hope, and appropriate placement, I began advocating for Jamey’s transfer.

I started advocating by writing letters. Lots of letters. It was a matter of survival, after all. A way to capture facts, statements and moments, which all seemed to slow down and speed up, eluding reality. In a certified letter to Bowmen, I wrote: “The District failed to meet Jamey’s needs. He has sustained physical injury to his face, head and mouth while in school. This raises questions about supervision provided. Safety and concern of students begins with top administrators “Why wasn’t I told non-public schools were available?” I also invoked California Penal Code 273a, which states anyone who knowingly allows a child to SUFFER or permits them to suffer in a setting that is ill-equipped to meet their needs, is or should be, guility of a misdemeanor. Amazing how if parents are even SUSPECTED of neglect or abuse of their child, you have a swarm of hypervigiliant do gooders storm into your life, but if state educators abuse or neglect your child under the color of education, well, who cares......they're just doing the best they can, but are they? No. They certainly were not, at least not for Jamey. I can even remember the Director of Special Ed, upon me reminding her how serious Jamey's self-injury is and how he "'can't learn" in school if he's constantly hitting self, respond, "Oh, Kim, you don' t have to be so histrionic about all this...I mean your son's been hitting himself for a few years now, so it's not like a major emergency..." Funny thing is, special education law states that EVERY time a child like Jamey hits themselves and causes injury, it shall be reported and documented. That's how they got away with so much neglect and permitted the self abuse inside classrooms. They just didn't report it. Or write it down. Or, they'd downplay it. If he hit himself 78 times, they'd write 6 times. What a great plan to shift focus off their accountablity. And nobody checks these school sites. By the time you make a complaint, it's the next Christmas Holiday before some befuddled bureacrat in Sacramento sends you a response, usually spelling your child's name wrong and getting all the information you sent twisted, no matter how simple you explained it.  

                                                            ***

There are two ways to fight a school district to meet you autistic child’s needs. One is to request a mediation hearing. The other is to file for a due process hearing. I made the mistake of filing for mediation. Total waste of time. After you file for mediation, the California Department of Special Education sends a man wearing a suit who encourages both sides to reach an agreement. Agreement? I would’ve preferred a kickboxing referee, a start whistle and at least 4 rounds, to settle the matter.

                                                      ***

A special education advocate we hired before the meeting wrote, "James would benefit from a school placement where staff has extensive experience with severe self-injurious behavior (SIB) and autistic disorder. James must be in an environment conducive to eliminating his self- injurious behaviors… James would benefit from a placement in a school environment with staff that has experience with severe self-injurious behavior and autistic disorder. His teachers (at current placement) report difficulty controlling SIB…I recommend James attends Stein Education Center. The teachers at this center have extensive experience with self-injurious behaviors.”

Despite school administrators knowing Jamey suffered numerous injuries at school from a lack of proper support staff, they denied the non-public school placement. And insisted we "try out the autistic class at another local school." "You mean the one with all high functioning autistics?" I asked. Yep, that was the one.
So, the Mediator made us try it out, and if it failed, THEN Jamey could go to the non public school.
                                                            ***

After I read massage therapy helped some autistic children, I purchased a deluxe spa package, praying it would relax Jamey’s body and mind. During the appointment, Jamey lay face down on the table while harp music played and a therapist gently kneaded his muscles. It was looking good until the therapist dropped a hot stone on Jamey’s back. Like a branded bull, he lifted himself off the table and started banging his head. “My God!” I asked. “What was that?” I asked. “Stone therapy,” the therapist said. “I asked for a Swedish Massage.” It took bags of ice—the ice triggering more self-injury—to calm him. “You know it’d be nice if just once something went right,” I told Mark. The second part of the package was hydrotherapy. Jamey loved this! As jets blasted, he let off a hum that became an unceasing giggle; ran his fingers through surface bubbles, kicked wildly and spent the next thirty minutes the happiest I’d seen him in months.

Autism and Special Education: Part Two of memoir

One of the first Special Education Reports: “James is a 21 month old…smiling, handsome child with large green eyes. He didn’t respond to name but gave eye contact and cuddled briefly, exploring my face with his fingers. His attention was brief. He would begin to gaze off with little blinking. He seemed pre-occupied with an inner agenda....On the basis of more than a 50% delay in range of developmental areas including cognition, language and socialization…James should participate in an infant stimulation program, including parent support and education, and a toddler program, to enhance development and monitor progress.”

The day the little yellow bus arrived, my stomach flipped and I felt the urge to hide. As the bus door flung open with a sucking hiss, I ascended the stairs. Whatever I did then, the driver must have sensed my panic. “He’ll be fine,” she said, pointing to thick black seat belts. “Fasten him into there.” I scanned the bus.  A girl with puffy cheeks flapped her hands and made spitting noises. “Hello,” I said with a nervous laugh. “Hi!” yelled another girl, wearing leg braces and waving her fingers wildly. Her right hand lay still and curled on her lap. I placed the seat belt around Jamey’s chest and waist. It seemed strange sending a toddler off to school.

Jamey’s first teacher was an ex-flower power activist living a post LSD trip teaching severely disabled children. During the classroom Valentine’s Party, she handed me a spiral notebook spotted with Marigolds and said: “Please write in this so we can record your son’s days and achievements.” Two weeks later I wrote: “Jamey has been happy the past two days. But he really needs to be worked with one on one with assertive direction.” The teacher wrote back: “Crying today. Enjoyed swinging and riding in the wagon around the playground.” I wondered if she had read my entry. The next week the she wrote: “Occupation Therapist (OT) came by. Her specialty is sensory integration. She put Jamey in a rope swing. He liked that.”

The OT was a friendly bronze faced woman who always wore a windbreaker over her dress. After her initial therapy evaluation, she had written an uncomplicated plan of activities: “Pull in wagon. Slide down slide. Sit on therapy ball. Put in rope swing. Play with play dough.”

During a surprise visit to the school—the only kind that matters— I spied Jamey across the playground, sitting under a Madrone tree. Behind him, a classroom aide, yards away, her back turned, tying another child’s shoes. It’s amazing how fast a mother’s body goes into motion. “What’s in your mouth baby?” I said, pulling green mulch from his mouth. When I lifted him, his diaper was soaked. I later found the teacher sitting at her desk in the classroom, reading Mother Jones.

At school, Jamey seemed bored and lost in the daily grind. Sand toys, bicycles, books and balls were still no concern to him. Occupational therapy finally began. “Jamey enjoys the slide,” the teacher wrote. An aide later told me she had bruises on her behind from taking Jamey so many times down the slide. “I don’t mind,” she said. “It’s nice to see him happy.” At night, Jamey found solace on the shower floor—water spraying his hands and head, all the time, in his own world, humming and laughing. Sometimes on weekends, as I’d clean the apartment, he’d sit quietly in his crib staring at beams of light dispersed from a window prism.

“On occasion, for no apparent reason, Jamey scratches himself.” I phoned the teacher. “Explain what he’s doing,” I asked. “A staff noticed him scratch himself,” she said. At first, I suspected the aide scratched him, until I witness him do it. Days later, the teacher phoned and said Jamey dug his nail into cheekbone. “It just happened so fast,” she said breathlessly. “We put Neosporin on it.” Jamey arrived home with an inch long laceration below his left eye. I bought five pairs of leather gloves and sent three to school. The next week, he arrived home again with cuts on his face. “Did he have on his mittens?” I asked. “We lost them,” said the teacher.

Witnessing Jamey run his fingernails across his chin, nearly missing his eye, simply defied logic Dazed by the latest shock, I remember driving down the freeway, the road like a dark, narrow tunnel, and forgetting what exit to take—arguing with myself. Feeling helpless.  Angry. Minutes later, I’d coach myself into a practical, positive mode. Pull yourself together. Focus. Find out why he’s doing this. Make it a priority.

Before I could make it a priority, the scratching quickly evolved into wild head-punching fits that came and went like an invisible enemy— surprising, attacking, lingering, withdrawing and returning, as I comforted and consoled, yelled and scolded.  “What are you doing?” I had asked in disbelief. “Is your diaper wet?” “Did you have a bad dream?” “Are you hungry?” I pleaded. “Why are you hitting yourself baby?” I cried. “For God’s sakes, stop!” I yelled in anger. “Leave your hands down!” Then, like a steady, circling rhythm that pounded the air. “No!” “No!” “No!” I repeated, rubbing his face.        

I scanned the white pages. There were local and national hotlines for kids being abused, but no such hotlines for kids abusing themselves. I found myself carrying Jamey, terrified if I put him down, even a minute, he’d harm himself. But I couldn’t carry him forever.                                                                  

“Jamey bit his hands and bruised his face today,” the teacher wrote. At a school meeting to discuss Jamey’s behavior, the teacher yawned and the administrator kept nodding her head and repeating, “I hear what you’re saying” before I finished talking.  When I slammed my fists on the conference table, the ambiance in the room turned hurried and chaotic. I wanted answers. Like an idiot, I thought they’d have some. “Why is he hitting himself?” I demanded.  “It may be his way of manipulating the environment,” muttered the school psychologist. “Do you have any suggestions how we can stop the hitting?” I asked. She fell silent. “Does anyone have an idea of why Jamey hits himself?” “Most likely rooted in tactile defensiveness,” offered the occupational therapist. The Director of Special Education hurried in and slung a stack of papers on the table, turned his chair to the side and sat with folded arms. As the minutes spun, school personnel spoke in unfamiliar jargon and shuffled papers. I didn't understand abstract speech or mannerisms. “What can I do at home to stop this behavior?” I asked. “We’ll discuss that at the next meeting,” said the school psychologist. “We need to discuss it now,” I said, but they were already moving toward the door. Was I over-reacting? Was their dispassion justified? Did I misunderstand the behavior? Was it serious or wasn’t it? My questions swirled openly and remained unanswered. In the thick heat of August, 1992, I met Colette Bowmen (not real name), the Director of Special Education. She was inside a cool room sitting high on a low back chair, examining Jamey’s file. Every thirty seconds or so, she’d glance up and ask how I liked the new city we’d moved to. An icebreaker, I suppose. Gradually, she moved toward the purpose of my visit. “Let’s chat about your son,” she said. I was hopeful and quick to state my concern. “Considering my son’s behavioral needs, what do you recommend?” I asked. She slouched and looked away, almost relieved, when two ladies strolled in. “Just a minute,” she said and excused herself. Side to side, the women whispered. Bowmen returned with a forced smile and rubbed her hands together. “We think we should put Jamey in Ms. Miles class and see how things go.” My first thought: who the heck is Ms. Miles? My second, Bowmen hadn’t addressed the self-injurious behavior. “You know my son punches himself in the head?” I asked. “Yes, I read that,” she said with the emotion reserved for recalling yesterday’s news. "He'll do fine," she added. "Ms. Miles is a wonderful teacher."

The first week Jamey attended school, the wonderful Ms. Miles phoned four times, and asked me to pick Jamey up. “He won’t stop hitting his head,” she said. “It takes three staff persons to stop him from beating his face.”  He was only 3 years old. “Have you tried putting him on the swings?” I asked. The one wonderful thing about the school was its giant indoor playground. From agility ladders to scooter boards and cuddle swings to hand driven tricycles, there was no shortage of adapted play opportunities. The Adaptive Physical Education teacher came twice a week for one hour. Twelve severely disabled children, two with aides, were in his class. That left little room for Jamey. Head hitting at school continued for weeks, until I realized Jamey hit less the days he was assigned to use the heated therapy pool on site. I met with the principal at Nick Center. “Since water calms him, I’d like Jamey to use the pool everyday,” I requested. She looked about as enthusiastic as a red light.  “I’ll look into that,” she said. Days later, when I didn’t hear back, I drove to the school and caught her in the hallway. “Making this work is difficult,” she snarled. “Difficult?” I asked. “The pool is a minute walk from the classroom and you have aides who want to take Jamey swimming.” Practical advice escaped her. “Swimming isn’t something schools must offer,” she groaned, as if that was relevant, considering the school offered swimming. Ironically, I’d just finished an interview with our local paper, extolling the therapeutic benefits of Jamey swimming.  I was quoted. ““Jamey hits himself until his ear bleeds. Water is one of the few things he responds to. It allows him to move his limbs and burn off the energy he would otherwise use to hurt himself. All special schools should have a pool like this.” The reporter wrote, “James’ only moments of peace arrive when he becomes waterborne.” When I showed the principal the article she looked at it uncomprehendingly and said: “I don’t see why you’re making such a fuss over swimming.” I explained why: “If he’s calm, he won’t hit himself. If he hits himself, he can’t learn.”  Back and forth we debated the issue. After much cajoling, Jamey was granted twenty minutes a day to use the pool. A week later I was told ‘the aide didn’t like getting wet.’ “Find another aide,” I had suggested. The principal didn’t, so Jamey’s swimming experience went down the drain. I wish I knew then to pull him out of school, but I was still under the delusion it was a place he could receive specialized education. I wish I knew then it wouldn't get better, until the last two years of his special education.

A team assessment summary and report was ordered. Apparently fifteen prior educational reports weren’t enough. The first “team player” was a school psychology intern, whose bursting briefcase, legal pad and pen in the shirt pocket, created an aura of professionalism. In her assessment she wrote, ““Jamey hits his head and cries. His self-abusive behavior includes hitting his face and temples with clenched fists. All activities must be supervised due to his habit of putting everything in his mouth. Jamey responds to quiet environment with consistent adult.” Regarding his self-injury: she wrote, under Behavioral Management, ““Hits head with hands. Follows established limits. Understands instructions.” 

The school nurse—another part of the team assessment---had written: “Jamey is vision impaired.” Eye exams showed normal vision. His eyes were fine. Under “Does health history reveal syndromes or medical conditions which may be related to the child’s educational functioning”—she left it blank. For her assessment, Ms. Miles wrote, “James enjoys the pool and drinks from a plastic cup. He likes animals cookies.” Additional comments were illegible. 

In November of 1992, the San Diego Regional Center mailed me a Behavior Consultation Information sheet, which I promptly filled out and returned. “Jamey is self-abusive, he punches himself for hours until his face, nose bleeds. Per recommendation from prior school psychologist, we tried to ignore the behavior, but it increased. He’s physically hurting himself badly. Help would be greatly appreciated.” Weeks later, another piece of paper arrived by mail. Fed up with paperwork I feared floated past faces and into space, I angrily wrote and underlined: “James is self-abusive. He punches himself everyday and everywhere we go.. He’s hurting himself badly! WE NEED HELP!”

A Regional Center behavioral psychologist phoned to schedule a home and school visit. Dr. Crane was a tall, thin man with wild hair. He accompanied me to an IEP meeting, where any hopes he’d come to advocate fizzled as he dozed off.  When I brought up Jamey arriving home from school with cuts and bruises, school officials clacked gum and checked their watches.  Unsure who was listening or cared, I said aloud: “Did you know Jamey’s helmet fell off on the bus the other day and the driver had to pull off the freeway because his ears were bleeding?”  “What happened,” muttered Dr. Crane his eyes a quarter shut. “I haven’t heard anything about that,” said Bowmen, energized on her second Pepsi. “Is there an aide to protect Jamey from hitting his head on the bus?” I inquired. “That's out of the question,” barked Bowmen, as if I’d asked for a guide dog.

© Kim Oakley--2011

 

Autism Memoir: Part One

Senseless Beatings

I am an eyewitness. A witness of beatings: beatings born of social apathy, ignorance and disregard. I witnessed when and where those beatings pelted lives and transformed thinking and how the beatings colored our attitudes and spilled into the world around us. I know this story well, because it haunts me. I have lived with its memories and lessons, its unresolved legacy for over 18 years.  

 I wish I could provide you an excuse for human apathy, as in, "Oh, those folks just tried their best,to help my son,"  but that kind of excuse is exactly why state officials stand by for so many years and do little to help self-injurious autistic persons. I mean, these experts were the ones with the fancy titles, right? Autism specialist. School psychologist. Behavioral specialist. Resource specialist. Program specialist. Everybody was a damn specialist, except nobody specialized in autism and self-injurious behavior. You'd think to those in "official positions charged with duty to help disabled", who saw my son hitting himself, at least ONE person would've said, "Wow, this kid is out of our league." They never did. Instead, they kept getting paid, for years--to do assessments and write reports about my son's behavior.  Yep, for 15 years an army of professionals wrote that my son himself and not once did they offer a solution or effective remedy. Now that's the definition of insanity. Here's how it went: each year a new professional would read the report from previous year and update it with a few suggestions pulled from a text-book, then sign a new date. I imagine this goes on  a lot inside system serving disabled. Maybe because parents don't have time or energy to waste arguing with people who have found a place to hide and do the bare minimum. Action? For some reason professionals always wanted to "talk." There is a time to talk and a time to move your ass and get something resolved. That's not how our government works. There is little, if any national incentive or pride on doing your government job well, as if the pre-requisitve to get such jobs read, "If you lack work ethic and have zero moral code of responsiblity to help others in need, and want to sit in a cublicle, answering private emails, chatting with fellow cubicle dwellers and arranging your summer vacation plans, please apply here."  Now don't be offended if you work for government and you do a good job. Good for you. I'm not talking about you. I'm talking about the, well, you know they type I'm talking about.
                                                                      ***             
If only I'd known then, what I know now, I would've found a lawyer who understood the system serving developmentally disabled. I learned a very hard lesson. One that I hope you don't have to learn like I did.

The best thing I can do is take you back. Take you back and tell you what happened. I hope what happened to us will never happen to you and your autistic self-injurious child.

April, 1990.  Northern California. I'm 23 years old. Single mom with two children. College graduation around the corner, I gripped the padded steering wheel and fantasized about lucrative employment, finding a good man and raising healthy children. No more volatile boyfriends. No more out-of-wedlock pregnancies. I was capable, smart and worthy, I said to myself. The power of positive thinking you might say.

I had always made sure my kids, Melanie (4) and Jamey (1yr), were clean and well dressed for daycare.   Jamey, sported a blue cotton T-shirt with crisp, beige pants and Buster Brown shoes. Melaine, her sandy blonde hair in pigtails and short bangs framing her huge, almond-shaped blue eyes, wore a yellow dress and pink Jelly sandals. In early morning motivation, I had washed my blonde feathered hair in Herbal Essence and traded my normal sweats and ADIDAS for a blue-jean mini-skirt, white angora sweater and black leather boots. Big hoops dangled from my earlobes, forever stuck in the 80's.

After dropping off the kids, I hurried back to my car. I was running late to class. A muffled call emerged. I turned. “Kim, I need to talk to you!” called the daycare director. “What’s going on?” “I think…I think you should have your son looked at,” she said. Clearing her throat, she added, “I’ve been observing James… I really think you should have him looked at.” I could feel maternal defensiveness building— that defensiveness that is always erect, ingrained, not always rational, but solid, because you will, at some point, utilize it. “He doesn’t seem to be developing right,” she continued. The words floated and I looked outside the window. “Thanks for the concern,” I said flatly.

I trudged towards Jamey’s pre-school room and peeked inside the classroom. Tchaikovsky’s Dance of the Swans played from a portable tape deck and a pair of toddlers flapped their arms to the flute beat. In the center of the room, alone on a rainbow colored vinyl mat, sat Jamey, fingers in mouth. A spunky girl jumped over his legs, turned and handed him a plastic key chain. He turned towards her and then—as if irritated by her presence---turned away. I began comparing Jamey to other eleven month olds. They crawled. Jamey didn't. They held toys. Jamey didn't. They anticipated and interacted with other children. Jamey didn’t. They pointed to food. Jamey didn’t. Why hadn't I noticed this? It had been four months since the October 17th earthquake. Was I still dazed? It had been a traumatizing event, but not one I had given much thought to.  And then there was an unnatural calm that climbed me. The kind that comes right before a tornado blows the roof off your life.

                                                                              ***

I scheduled an appointment with the pediatrician. A half hour later and no decent magazine to thumb through, a nurse escorted us into another room. Minutes ticked by. After a light rap, the door swung open and a doctor with a beard and thick glasses hurried in. Introductions were made. “Tell me your concerns,” he asked.

As Jamey stared intently at a wall display of colorful hospital brochures, the doctor appeared to study him. “MMM…he does seem delayed,” he said, and referred us to a child psychiatrist.

Questions began. How did I feel during pregnancy? Anemic. Complications? The Rh Factor, but I had the shot. Normal delivery? Yes. Drugs or alcohol? No. Father’s family history? Was there one? When he asked when I first noticed Jamey was different, I said I didn’t know and was disgusted with my own ignorance. For Pete’s sakes, I was his mother!  “Was the fetus exposed to toxins?” continued the psychiatrist. “How would I know?” I asked with slight irritation. “We live in a toxic world.” “I see,” he said, and scribbled on his notepad. “Does your son have favorite toys or pets?” “No,” I said, with a prick of sadness. “He doesn’t seem interested in toys, dogs, cats or even people.” 

The psychiatrist handed Jamey a jumbo sized Lego, which Jamey held briefly, chomped and dropped. The shrink shrunk back and lunged ahead. “Peek-a-Boo!” he puffed, spreading his hands open and giving Jamey a deliberate asymmetrical grin. No reaction. Stumped by Jamey’s uncommunicative status, he referred us to a pediatric neurologist. What else could he do? A man of his profession doesn’t get far with that kind of patient response.

                                                                                ***

The Pediatric Neurologist:

Minutes later the neurologist positioned himself on a stool and slowly announced: “Your son presents symptoms of childhood autism.”  “What’s autism?” I asked in a desperate, demanding tone. “Your son appears to live in his own world,” he said. “And he’s significantly delayed in social and language development…” “Will he ever talk?” I interjected, the room closing in. “He may never develop speech, and may require life-long care—possibly institutional care.”  As the neurologist expounded the prognosis and treatment of autism, he may as well spoke Gaelic, because after “institutional care,” I went deaf.

                                                                   ***

For weeks, I roamed the University library, locating titles, subjects and authors from card catalogs; viewing autism a temporary obstacle to be conquered, and not a life long disorder. Depositing books on a long table on the third floor, I’d chip through mountains of material, until my eyes burned with fatigue. I found little comfort in the research. Studies seemed over-intellectualized, sluggish and vacuous—a product of government funded guesswork— where elusive experts padded last minute conclusions with intellectual drivel. Most research of self injurious autistics involves brief studies of institutionalized autistics, as if random, 15-minute visits birth healthy data, background, hypothesis and analysis.

                                                                       ****

                                                                              ***

I’d often visit my parents on weekends. On a lonely Friday night, when I’d hoped for the comfort you seek from family during times of doubt, crisis and despair, my parents were their normal distracted, argumentative selves. As the potatoes steamed and the chicken simmered, my mother, for reasons I failed to see, flung a fork at my father. He ducked and laughed. She called him an asshole. He chuckled. She slammed her plate to the table and told him to f*** himself. My sisters giggled. My brother stabbed the main dish and the cat vanished. Jamey, who remained aloof to the dysfunction, opened his mouth for another bite. “It’s a Wonderful Life,” said my father, imitating Jimmy Stewart.

When the subject of Jamey’s diagnosis emerged, vilification began. “The bastard probably tried to smother him,” quipped my mother, besmirching Jamey’s biological father.  “He figured a baby would cramp his lifestyle,” added my cop father, evaluating leads as to why his grandson was autistic. “You know these guys. They have a baby, see the bills rolling in, mother isn’t paying attention to them anymore, and then the next thing you know it’s a pillow over the kid’s face…” “Dad!” I said, as Jamey sat on the sofa, chewing his shirt.  “I’m sure the doctors would’ve seen something like that on brain scans.”

“You can’t blame people without knowing.” “Whataya mean you don’t know?” asked my mother. “I didn’t say I didn’t know,” I answered, my voice almost going soprano. “I SAID nobody knows!” “Well somebody better know something!” shouted my mother. My father took a long swallow of coffee.  “Don’t worry your mom knows it all…a regular Colombo.”  “You  f*****g a*****e,” said my mother and tossed a pillow. Profanity had mixed meaning in our family. Tones and expressions governed their delivery. This time, it meant, “Get out and do something nice for me.” My father left the living room. Later, he returned like a dutiful English butler and offered my mother a cup of Darjeeling.  “Screw you,” she replied, which meant: “Thanks.”

                                                              ***

At 18 months Jamey suddenly pulled himself along the wall, let go, and started stepping. Feet and knees turned inward, steps were strong and deliberate. “Good job James!” I had hollered, leading him around the apartment. “Go! Go!” I yelled, as he ambled towards me. That night, as Jamey kept stepping, the paralyzing fear he would end up in a wheelchair departed and I was invigorated by hope......

To define autism is difficult. It's a complex disorder. A 1990 Bantam Medical Dictionary medical dictionary defines autism as: “A rare and severe psychiatric disorder of childhood, with an onset before the age of 2 ½ years.” Yet, Coleman and Gillberg, writing in 1985, in The Biology of the Autism Syndrome write, “In all, speculation leans strongly toward a biogenic explanation and autism is no longer seen as a psychogenic problem.” Later, in 1993, Charles Hart, author of A Parent’s Guide to Autism, writes: “Autism is a neurological disorder that affects an individual’s ability to process information from different areas of the brain.” Heredity may play a role. Clinical reports and studies suggest family members of autistic persons display various and subtle autistic behaviors.

And while the experts aren’t sure what causes autism, the general agreement is:

• Autism begins at birth or within the first 2 ½ years of life
• Autism is found more frequently in males than females.
• Autism has multiple etiologies and pathogenesis
• Autism is a serious developmental disorder
• Autistic children look normal in appearance
• Autistic children resist social interaction
• Autistic children show little interest in people
• Autistic children may be overly sensitive to noise
• Autistic children have impaired communication skills
• Autistic children often require structured environments
• Twenty percent never speak
• Twenty to thirty percent develop epilepsy by adulthood
• Five to seventeen percent are self-injurious
• Some stare at objects for hours
• Some engage in repetitive motor mannerisms
• Some throw violent tantrums or hurt others
• A smaller percentage are high functioning.
• A rare few are savants
• In Emergence Labeled Autistic, Temple Grandin—a high functioning autistic author— put it this way, “No two autistic children are alike."
• All need support, love, acceptance, respect

                                                                              ***
When he began having seizures months later, an EEG confirmed epilepsy. He was placed on Valporic Acid. Jamey was soon tested for Fragile X, Angelman Syndrome, Prader willi, Lesch Nyan Syndrome and other tests I can’t recall. Tests were always negative. Official diagnosis. ‘Autism and epilepsy’. Etiology unknown.