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March 24, 2011

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.


Cyndi Livingston said...

I just watched a video of your Jamey, and I am speechless. What I saw mirrored what I live with...sort of. First of all, let me say that you are a dedicated mother, and you are no doubt a strong woman.
My husband has tonic/clonic seizures with post-ictal psychosis. Although he has had epilepsy all of his life, he only had them few and far between until the last couple of years.
To make a long story short, to best of our knowledge, my husband, also a Jamie, does not have any form of autism, but after roughly 300+ seizures in the last 2 years, he, too, beats on his head, but only while seizing.
He claws himself, chokes himself to the point of blacking out, bites himself...the list goes on. He broke his nose twice, and broke out most of his teeth. He had to have 13 teeth pulled at once because of his epilepsy.
When he comes to, he has no memory of any of it, but our three kids have been through hell and back helping us out with these seizures. Because Jamie hits himself, no one really takes his illness seriously, thinking that he's faking, but I saw in your son exactly what my husband is going through.
If you have any info about seizure treatment or coping that you would be willing to share, we would forever be greatful. And God bless you! ou and your family will be in our prayers.
Thanks so much--Cyndi

Beth said...

I am in tears after reading this. My son is 9, and not autistic, but he has severe brain malformations and developmental delay. This past year he started punching himself in the face, so hard that he regularly splits his lip and gets black eyes, and even chipped his front tooth. His school has been fantastic, and is very proactive about trying different methods to reduce the behavior. They've had some luck with a pressure vest and wrist weights for proprioceptory input. Unfortunately, at home, these tools are ineffective. He seems to hit most when he's around me. We're at the point of trying arm splints to at least minimize the force he can generate. Doctors have been stumped--the best they could offer was a prescription for anti-psychotic drugs. I will keep following your blog. From one desperate mom to another, here's hoping we can find a way to keep them from hurting themselves.

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