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May 26, 2011

A Simple Teeth Cleaning: A Story of Autism and Dental Care

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A Simple Teeth Cleaning: A Story of Autism and Dental Care.


2009. The phone rings. Jamey’s super energetic teacher who speaks faster than a football announcer says Jamey’s been hitting himself while eating and refusing to walk. This is odd, we agree. Normally, eating is a happy event. I speak to Jamey’s special education aide. The aide is an Ecuadorian man working towards a special education credential. (He’s already earned one in my book).  He and I discuss why Jamey isn’t walking. We can’t figure it out. We visit the pediatrician. He asks if we’ve seen a dentist. I explain unless Jamey’s asleep, diagnostic dental X-rays are impossible. I explain I’m working on a dental/Kaiser deal, where dental dentist can do dental work along with Kaiser medical staff. It’s difficult to explain why Jamey’s wandering the room and humming.  I suggest Jamey’s non- verbal status warrants medical investigation. Maybe x-rays of mouth or MRI? The pediatrician says a head and neck MRI is costly and there’s no guarantee mouth pain is causing escalation of self-abuse. He sends a referral to orthopedics. Orthopedics can’t see Jamey for three weeks.
On the way home, we stop at Carl’s Jr. and when I use the bathroom and discover there is no toilet paper and the kid in the next stall is screaming and repeatedly slamming the toilet seat, and someone has left a dirty diaper in my stall, I begin to hurl profanities in Spanish. When I realize people in this neighborhood probably understand, I switch to German.
Because our Dental plan doesn’t cover general anesthesia for disabled children. I phone Delta Dental. “Under the principal benefits and covered services of your employee-paid and dependent care costs, anesthesia, except for oral surgery, isn’t a covered benefit,” says the Delta representative. I say oral surgery follows a diagnosed dental problem. I explain we can’t diagnose a dental problem unless my son’s under dental anesthesia. I ask if there exceptions or waivers? Never. I suggest this discriminates against Delta disabled patients who require anesthesia to receive dental care. “You’re the first to ever complain about this,” says the Delta representative. Funny thing is, I’m often told I’m the ‘first person to ask’; ‘the only person to complain’ and ‘the only unsatisfied customer... ever.’  Whatever. This must be a standard response from dullards to diminish the importance of your concerns.
The Delta rep blames my husband’s work. “They should’ve negotiated it into their employee contract,” she says. I speak with an employee in the fire department’s personnel division. “Anesthesia for cleanings, extractions, fillings, root canals or X-rays isn’t a covered service,” says a chipper female employee. “Okay, so of thousands of state firefighters there isn’t ONE disabled firefighter or dependent requiring anesthesia for dental work?” “You’re the only person to ever ask,” she says.  Is there a special allowance? Can I appeal this? She doesn’t think so. Her supervisor doesn’t know. And they’ve misplaced a number to some guy in Sacramento who they aren’t sure retired, but he may know. Because I’m about to say things I may regret, I hang up and dial Kaiser. The number is disconnected. I track down the updated number. Now, it’s a different department. At some point, a file cabinet gets kicked, several papers are shredded and I slam a door. Finally, I find the number. Good news. Kaiser has recruited dentists from Delta Dental, so Kaiser and Delta insurance carries can receive anesthesia and dental work. Then I discover the most pathetic news. Only one delta dentist in San Diego is signed on with Kaiser.

The preparations for Jamey’s dental work were more elaborate than I expected. Before the dental cleaning under anesthesia, Jamey needs a dental and medical pre-op exam. What’s more, the dentist’s office is twenty minutes south of our home while the pediatrician is two hours north.. A week or so later, inside an exam room, a nurse argues with me about the Hepatitis B vaccination for Jamey. “My son isn’t a drug user or sexually active,” I say flatly. The nurse sits across from me, hands folded; legs crisscrossed and find her way to another topic. “How much does you son weigh?” she asks. I didn’t know. It took three nurses and me to steady his angry hands and wry body on the scale. Meanwhile, the pediatrician smiles sweetly from the hallway, as if we were having a good time. “We’ll have to get him on the exam table” the nurse says in an apologetic tone. The pediatrician steps in the exam room and peers into Jamey’s ears, nose, eyes and throat. Then he attempts a rectal exam, which ignites a sudden rush of panic, my shoulders tightening, as I anticipate head hitting. But there is no hitting. “He seems healthy,” announces the pediatrician. “I’ll fax the paperwork to San Diego.”

On the morning of surgery, a woman from Kaiser phones and says the pre-operation paperwork is insufficient. Apparently, the pediatrician hadn’t recorded Jamey’s weight and height. Fire rises from my chest. “And you’re telling me this today,” I blare.  “The anesthesiologist says she called you about the paperwork.” “What!” I snap. “I’ve never spoken to an anesthesiologist.” “Why don’t you call over to anesthesiology,” says the woman. I phone anesthesiology and speak to a girl named “Andrea.” Andrea insists an anesthesiologist has spoken to me about the paperwork.  “Then this anesthesiologist is lying,” I say briskly.  “No,” said Andrea calmly. “And you are being abusive.” For a second, I’m speechless. “Excuse me?” I ask. “Your tone is unacceptable,” she says, as if she’s just left an anger management seminar. “Cut the shit,” I fume. “Grow up and handle the situation.” Silence and then, “Cursing is unacceptable,” she stammers and hangs up. I push redial. “Let me speak to the anesthesiologist,” I demand. “I’m sorry, but you are harassing me,” states Andrea. I am stunned. “What are you a mental case?” I ask. “I’m trying to find out about surgery for my son and you’re playing mind games.” Click. I pace the kitchen, cursing aloud. “God, I hate weak, hypersensitive, paranoid people.” I redial. She answers without speaking. “Look, is my son’s surgery on or not?” I ask quickly. “I’m getting really angry here.”  Like a robot programmed by another mental case, “I do not respond to threats,” she says, and hangs up. By now, I realize “Andrea” has attended too many violence in the workplace seminars and is incapable of handling confrontation outside discussing the color of coffee cups.

Arrival time for the 4:30pm surgery was at 2:30 pm, but I had re-arranged pre-operation paperwork over the phone, so we’d arrive at 3:30pm, because I wasn’t going to sit in a waiting room with a hungry, self-injurious autistic child. Half way to Kaiser, Jamey begins slapping his legs and elbowing his ribs.

 In the backseat, Jamey’s brothers watch Me, Myself and Irene on a portable DVD player, ears covered.  “Guys!” I yell and point to Jamey. Removing the headset, Mike restrains Jamey’s hands and Matt leans forward and hands Jamey bottled water. Jamey takes a sip then drops it. Eyes forward, as we travel south along Highway 15, my right hand skims the passenger floor, until I find the bottle. Meanwhile, Jamey starts slapping his head. Why am I not on massive doses of Prozac, I wonder? Back and forth, arms are held, Jamey cries, Mike says the s-word, Matt groans, water is thrown and drank, until finally, somehow, we made it to Kaiser. I search for a handicapped spot. Then I remember I didn’t renew the handicapped placard. F--- it. I park anyway and paste a note inside the windshield: “Transporting disabled child.” 
In admitting, a Kaiser functionary took my co-pay, which I argue, since he shouldn’t be paying jack shit, and then sent us to the third floor, where a nurse instructed me to remove Jamey’s shirt, pants and leave on his diaper. As I kiss his head the nurse asks questions. Questions I’ve already answered. The Delta dentist on staff at Kaiser comes towards me, his arms long and flowing. He’s like a tree wearing scrubs. “Take care of my son,” I said with a look I hoped he wouldn’t forget. “Don’t worry,” he replied. But I worry. The Kaiser anesthesiologist rounds the corner, adjusts his glasses and extends his hand. “Would you care for some schnapps?” I joke. The dentist grins and the anesthesiologist blushes. For a half hour, I walk Jamey around the room while he tries to hit himself. Two patients awaiting surgery stare in disbelief. Finally, two nurses load Jamey onto a gurney and wheel him into surgery.

Twenty minutes later, the friendly and efficient dental assistant, Charity, rings my cell phone. “X-rays reveal an abscessed tooth,” she says. “We’ll need to do an apicoectomy and a bone replacement graft using retrograde filling. And he has two erupted teeth that need extracting.” Apicoectomy? Bone graft? “Go for it,” I say, as if there’s an alternative. As I swallow the last sip of my cold coffee, I realize the abscessed tooth may explain the recent escalation of self-abuse. Meanwhile, Mike and Matt are running up and down the hospital stairs. I give them five bucks for candy and gum. When the gift shop lady stands in the corridor summoning the parents of ‘these children’, I walk by like a stranger in deep thought. Mike discerns my tight smiled expression, grabs Matt and follows me into the elevators. “What did you guys do?” I ask. “Matt was spinning the glass fairies,” says Mike. “So?” protests Matt. “Then he knocked over the cards and the lady got mad, but he didn’t mean to and we picked them up.”

 6:45 pm. After surgery, the dentist drops out of sight in an elevator and Jamey’s upstairs in recovery.
Before we leave, I ask the Kaiser anesthesiologist to place a STAT on the prescribed pain medicine.

Apparently, the word “stat” is not an important matter, because an hour later, Jamey’s name flashes on the screen and I pick up the Tylenol/Codeine. Back upstairs, I get lost in a triangular maze of doors. When I find my way inside the recovery room, three nurses surround Jamey. Jamey is repeatedly changing from a prone to fetal position, trying to get cozy. A nurse slides a pillow under his head. As he moans, the smell of metal pipe emerges, the lingering aroma of anesthesia. Red saliva trickles down his chin. Applying ice to his face, the nurse says: “poor little thing.” Another nurse rubs his free hand. “He tried to hit himself,” she says, as he nearly socks his chin. “Bless his little his heart,” says another nurse. “He has self-injurious behavior,” I explain for the ninth hundredth time in my life. And for the nine hundredth time I see painful bewilderment stain the faces around me.

Note: On July 1, 2009, the state of California CUT Medi-Cal coverage for dental services to autistic pesons 21 and older....Meanwhile, we're sending millions to foreign countries, exploring Mars and providing free medical care to non-citizens. Way to go California. Way to show your tolerance and inclusion of autistic citizens.
©May 26th, 2011 Kim Oakley

May 25, 2011

Handling Severely-Autistic Patients Admitted to Hospitals

Hospitalization of Severely-Autistic Patients with Behaviors: Helpful Tips for Nurses and Physicians

·       Have doctor order CNA (sitter) to provide 1:1 protective supervision

·       Ask family or caregiver to provide list of favorite foods, so food service can prepare what patient prefers, thereby avoiding tantrums, weight loss or refusal to take meds (you can hide some meds in soft foods) while hospitalized

·       If no advice given regarding feeding, consider autistic patients may prefer various textures and tastes (crunchy, soft, salty, sweet) and/or have aversions to certain smells or temperatures (cold or hot food). You may also have to mix crunchy with soft or salty and sweet to encourage eating

·       Reduce noise level around patient (turn OFF loud, continuous beeping sounds)

·       Consider ear plugs, if tolerated, to avoid aversive sounds (i.e.…other patients screaming, loud conversations outside the door)

·       Avoid straight catheters, if possible

·       Consider extra pillows, sheets and blankets for extra sensory support

·       Consider using TV or music for audio-visual distraction while attempting IV, changing tubing, etc…

·       Autistic patients may not tolerate staying in bed. If safe, have doctor order CNA sitter and/or nurses to frequently walk patient to prevent agitation, feeling “trapped” from sitting still for too long

·       Ask family or caregivers to provide familiar items, posters, toys, etc…that may comfort patient during stay

·       Consider side effects of many drugs may trigger or exacerbate disruptive behaviors

·       Many autistic patients are hypersensitive to side effects of drugs and/or may present with PARADOXICAL response to drugs (i.e.…diazepam may ‘energize’ instead of ‘sedate’ and anti-psychotics may trigger psychotic behavior)

·       Non-Verbal Autistics are at particular risk of being misdiagnosed or undiagnosed due to inability to communicate pain, discomfort or underlying medical problems

·       Example: Pt. screams when you touch right leg. Pain meds are given. Reality: There is no pain. Pt. is hypersensitive to touch—this is baseline behavior

·       Example: Pt. is behaving WAY off baseline. Tugging at ears. Punching stomach. (This may not indicate location of pain-- it may be explosive reaction to pain in other area of body). CBC test normal. CT head and Chest x-rays normal. Liver panel normal. Physical exam shows nothing. Now what? Consider elevated ammonia levels. Gastrointestinal issues Impaction? Gluten sensitivity? Acidic stomach? Ear, nose & throat exam? H-pylori (especially if live in group home setting).

·       NON-verbal autistics require more than a routine exam when they suddenly behave way OFF baseline. Why? The answer should be obvious as to why, but in case it’s not obvious: Because they can’t tell you what’s wrong. Research shows numerous cases of explosive or/and chronic behaviors in autism linked to undiagnosed medical issues. Investigate and rule out until probable etiology identified. And, treatment stabilizes and—ideally- heals (from whatever acute or perhaps newly identified chronic medical problem it is) patient. Don’t just sedate and send home

·       Please, try not to get ‘easily offended’ by parents or caregivers who advocate for autistic patients. It’s critical for the autistic patient’s health and safety. Be happy they care. Work together.

May 18, 2011

Educating the Most Severe Side of Autism: A Triumph in a Small Town

Award Winning Non-Fiction Blogs - BlogCatalog Blog DirectoryIt's no secret that severely-autistic students who punch themselves and have seizure issues, aren't normally included in regular education settings. Indeed, the challenges facing teachers dealing with severe autism is a world apart from the cozy, quiet cubicles and conference rooms of policy makers. That's why my son's special education placement over the past year and half, must be told. You see, he attends a public high school, where nobody like him has ever--- and most likely will never again--attend. It's almost miraculous he's there. And that the--bless their hearts-- Special Ed. Director, nurses, teachers, staff, haven't been driven into another profession. They have been strong. Steadfast. Kept their sanity.

What a wild year it's been. From joyful days, laughing and making eye-contact to self-abusive meltdowns rooted in pain so severe 911 had to respond and drop seizures that had everyone on high alert to his obsessive walking around campus--there are few schools, few towns, few people, that could ever handle this. And they've done a fabulous job.

What's more, it's amazing how his very presence at school, an anomoly in public education, has touched so many lives. Last month his special education teacher told me severeal teacher aides now want to work with children with autism. Others are considering a degree in nursing, psychology or special education. School security has also been touched by autism. On more than one occasion, the female and male security persons have let my son and his one to one nurse ride in the golf cart around school, during behaviorally challenged days. Then there's the vice prinicpal and principal, who probably never imagined in all the hours they worked to get their credentials, they'd see a student like my son. But they've all supported him. Tolerated my episodic meltdowns rooted in fear, anxiety and exhaustion. Accepted my son for who he is and what he can do. They adapted. They overcame obstacles. For that, they have my respect and gratitude. If anything is to be learned from my son's special education experience in this little town, in this small school, it's that people, when given the chance and when willing--can face fears, expand hearts and open minds to work together to support students with severe autism, medical issues and challenging behaviors. It's not easy, but my son is proof that supporting severely-autistic persons in ANY SETTING, including adult day programs, can be done with the right supports. And it doesn't have to bankrupt a school or state. Or entail endless fights, lawyers and angry meetings.
It probably helped that I provided the school with enough information about my son where they were never left alone to deal with him in the dark. And I made sure he had a 1:1 nurse that was strategically matched to his unique needs. A lot of times schools and programs can't handle the autistic person because they don't know how to handle them. You have to teach the teachers and everyone else who is working with your autistic child. You can't expect them to know what to do unless they're given examples and often shown what to do.

So, let me say Thank You. Thank you to the special education teachers, director, student aides, security persons, school nurses, vice principal, principal and all others (911 responders, etc) who have made my son's last few years of special education an experience to warmly remember and will remain an extraordinary triumph in educating students with severe autism.

May 13, 2011

Looking at Autism through the Eyes of God

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I’m at the library. I hold the video of “Horse Boy”, and mumble to myself, “What a bunch of crap. Just another movie about new age adventures and curing autism…” I put the video back on the shelf. Minutes later, I return. I check the movie out. Days later, I play the movie. As I observe, I am moved by the pain in the parent’s eyes and the pressure of dealing with their autistic boy’s tantrums. Tantrums, as described by the parents---rooted in neurological deficits—not unlike those of my own son, when he engages in self-injurious behavior. The parents are searching. Searching for what every parent of an autistic child searches for: hope, peace and healing. Who am I to judge these people? To cast stones? Are they so different from me, a Christian, who has sought the laying of hands on my autistic child, in hopes of healing? Yes, they consult a shaman, something Christians would shy from and see as dabbling with demonic forces. Perhaps this is true. And I wouldn’t do it. Yet, is it also true that God, in His supreme mercy and grace, would look down on a family in such turmoil and see their pain, honor their journey and deliver what they are seeking? I’m not sure, but as I watch the movie, I see the parent’s determination, their willing to be beaten, whipped and washed in their journey to help their son. Is it so different than my own journey? The times when I’ve been so overwhelmed with fear, panic and trauma, that I’ve punched my own face and ripped out my hair? What is it about dealing with a child with autism that drives parents to insane exhaustion? That leaves them feeling drained, drowning and in a fight for their, and the child’s life? Is it the endless tantrums? Or the hopelessness of drugs to mitigate severe behaviors or is it witnessing their child drifting away, as if in a hot air balloon, and never returning? Or is it watching a disorder ravage their lives—lives in which they have no control? I’m not sure, but as I watch the movie, I see the same worries I and other parents have, when living with autism. The chronic worry and panic and spirit of a warrior engaged in a battle with forces that threaten to unravel their lives and hold them captive forever. Where is God in autism? Perhaps He is everywhere in this fight. No matter who or what we are. No matter how far we’ve fallen, no matter how close we get, He is there, watching, waiting to see us fulfill the purpose in living with autism. In facing something that we never dreamed would invade our lives. Each autistic child, set aside for a purpose we may never understand, nor accept, but nevertheless, fight for in a world that is not set up for the autistic person, yet when penetrated, learns to accept this person as part of the landscape. Part of the purpose we are here. Part of the plans we may not see, nor create. What is it about autism that leads us to areas of the world that will teach us, embrace us and comfort us in our sorrows? Is it our innate desire to conquer that which threatens to destroy us? Or is it our innate desire to know the power and peace of God? I don’t know. All I know is my own journey, my own struggle to find peace with God in dealing with autism—severe autism, self-injurious behavior and epilepsy. It’s a journey that rocks my soul. Affects all who are near me. All who know me and see what is happening. There are days I accept this journey, ride it as if it’s a horse galloping along trail that I’ve always known. Then there are other days that I feel I’m drowning or suffocating under the pressures of living and treating my son’s autism. There are nurses to train and monitor. And there are medications to analyze and give. And there are days to die to myself and days to live. There is nowhere in the bible that talks about autism. The closet thing I see is a man cutting himself with stones, and he’s possessed. In the Horse Boy, the Shamans suggest the autistic boy is cursed by an ancestor. Of course as a Christian this should raise my suspicions. And it does. But when you witness a child punching himself in the face and head for over 18 years, and even the sounds of slapping and punching send you into panic and self-abuse of yourself, you begin to wonder. You wonder why God hasn’t healed this insane behavior. You wonder why it’s gone on so long with so little relief. You wonder how you can take another minute of it. You wonder why nobody can stop this behavior. You wonder how you will make it through another year. And then you ask yourself, is it fair to judge anyone, living with autism, who is doing what they think is right for their child? And then you say a prayer, for all families living with autism and you wish them the best and you pray they will find hope, healing and peace.  And that it isn’t autism that is the problem, but rather the lack of love, support and services for families with autism, and you pray that this will change. And that there will be an awakening of the hearts and souls of all, and that all autistic children and adults will be loved and accepted and receive supports and services needed along this mysterious journey.