A Cogent Advocate for TBI Folks

As lofty as the view from our family homesite, sliced into the foot of Aeneas Mountain, possessed of the naivete of the possible, I wanted all our kids to live.

My first "phone call in the night" rang at 2 am: "Mom, there's been an accident. We're down on Pine Creek Road where some (high school) seniors rolled their truck off the road and down the bank to a yard.

"Mom, they were drinking. They are kids we know from school. We called the ambulance and have to stay here until it comes. We're helping and I've gotta go. We'll be home soon."

My kids were driving back from a rare shared Saturday night outing, after the oldest had driven the 250 miles home for a weekend away from college during his first year at the University of Washington. They had gone bowling together with some high school pals in a town 35 miles away.

Drinking was not only tolerated in that sparsely populated county, but some rural parents occasionally hosted keggers in their secluded fields and orchards. In fact, we wrote a new page in the history of teenage party spots when we purchased acreage on which to build our home, not knowing that it had hosted and overlooked a prime party spot. We lived ten miles out of town, off a dirt road, and yes, alcohol-driven accidents do happen along those country roads. It's just that our children's lives were spared that year. One of the kids involved in the tumbling pickup truck died, and others would never forget the loss.

I was studying art at CWU. That's me, a couple months before my son's TBI. My focus was family interactions, and at this point I had one year of art instruction. Even while I painted on December 15, 1988, an overwhelming urgency to call my oldest son grabbed me, Within ten minutes I ran home and called him, but got no answer. As soon as I hung up the phone it rang, giving me the phone call no one wants to receive. I call it "the call that came in the night!"

What followed was a very weird conversation with my mother-in-law, who lived in Seattle. She was in her 80s and her disjointed subjects of discussion made me think maybe she had dementia. I hadn't spoken with her often since returning to college the previous year, with the possible intention of divorcing her son. After about ten minutes she asked for my husband's phone number, at the home I had left, about 150 miles north of my university. Now that was strange. She had been calling us at that phone number for years, and she knew his business number. I gave her the phone number, and asked why she wanted it. "Because Nick's been hurt in an accident", she said, as if I wasn't his mother! Nick and his brother Matt had plans to get to my home, over Snoqualmie Pass, the following day, for a Christmas celebration.

I called the Emergency Room at the hospital my mother-in-law named. The treating doctor told me to get there as fast as possible, but since I was 100 miles away, over the icy mountain pass, that I must get someone else to drive. My son's situation was serious beyond belief, with massive, diffuse Traumatic Brain Injury less than half an hour ago.

My brother, who lived less than a mile from my college apartment, answered my call, although he was bone tired from long commutes to a demanding job at Snoqualmie Pass, so he had made the 60 mile commute twice that day already. My voice must have sounded like it came straight out of science fiction movie, since the trauma had wiped me clean of any warm feeling, imbuing me with frozen fear. It seemed like the clock was frozen too, as I packed my backpack and purse for a couple overnighters, even as I unfeelingly littered all the rooms of my apartment with dropped items it just didn't seem like my finger could hold onto. My normally tidy home looked like someone had given it a good shaking, displacing the contents.

It was more than I could bear alone so I walked around the small duplex and opened my neighbor's door, without knocking. She looked up from her desk, her face mirroring mine - a mother in great despair! I stumbled over the story. It shocked me too, to hear myself tell her what the doctor told me. It started with a short six block motorcycle trip to the grocery that was cut short by another student driving her parents' car and the collision, the flight through the air, the impact, the agonal respirations (within a few breaths of death). I'm not sure how much she really heard, but I remember how shaky painful it was for me to hear myself tell it.

I was freezing cold - my body temperature must have dropped several degrees within minutes of the phone call. I'd tried to warm up in my padded jacket on top of a sweater and turtleneck, gloves and wool hat, but I remained chilled like the far-back box in the freezer. The trip I anticipated was the same one I had taken a couple years before that, after my father had suffered a fatal massive heart attack. Not until we were underway on that frozen night did the tears flow.

I arrived at the hospital, which I knew only as the "County Hospital," I ran up the five steps to the front door --- but it was Closed! A padlocked bar slammed across my heart and my breath shortened. My brother had driven off to park the car. I stood there frozen, and again wondered "why was Nick taken to the County Hospital when he has private health insurance and could have gone to the best hospital?" Down the steps and off to the north end of the building - it was after midnight - I ran, and lucky for me, ahead lay the Emergency Entrance, with an open door, but I had to pass through a security check before I could really get to the counter - remember, this was in 1988 Seattle, disconcerting.

Once inside, past the counter, a doctor came right out to me and shocked me even further. What the long-distance call had confirmed was so true. Survival was iffy! He could only spare a short conference with me because they had work to do, so I joined a group of college students I'd never met, who Matt, his younger brother had summoned. It seemed like we were linked in fear that if we spoke aloud our worst fears would make them reality.

Then we got the word to go upstairs --- to the 9th floor, the ICU, but not before I saw Nick on the gurney, covered in white - his face nearly covered with tubes. I gasped and touched him through the sheets, saying "Oh Nick!" Then he was gone to a special elevator and the crowd hunted down the regular ones. We fit in one rising - all four elevators full. We filled the waiting room to overflowing, soon all of us gathering in the wide hallway, so we could be together, and we generated a low murder.

I was called into the ICU, since no other family members had arrived yet. Matt was still gathering friends to come. Their father lived hundreds of miles away, over a snowy high mountain pass. Unbeknownst to me, our teenage daughter had gone to the far reaches of the valley for a weekend at a friend's ranch. It took hours only for him to retrieve her, after scrambling to pack some of her clothes, and then his, and they were on their way for a very long torturous drive.

Inside the ICU I saw the steady drip of red blood from my son's left ear, that would continue for ten days. After a few hours' sleep on waiting room furniture I got word that the neurosurgeons still thought brain surgery wouldn't be necessary since that bolt, that had been inserted through his skull during the night, the one that monitored intercranial pressure, continued to indicate low enough pressure.

That meant they didn't expect his brain tissue to swell so much that it would kill more brain cells.. 90 minutes later three doctors had silently placed themselves across the bed from me, unseen by me, with my head lowered to my son. Immediate brain surgery was necessary to prevent certain death in the next thirty minutes. His brain stem was hemorrhaging.

My son's father had arrived after 6:30 am, spoke to doctors, saw Nick, and left for his mother's house in Seattle. He was showering when I called with a sense of urgency about the change in status. The emergency left me no room to relate the whole story, and this was in the period before everyone-and-his-brother carried a cell phone, so from the moment I hung up the phone after my ER summons we didn't speak.

Matt, and an uncle and I were the only ones present at bedside. Chances of merely surviving the surgery were fifty/fifty. Chances of waking from the coma stood at 1/100,000, according to those three neurosurgeons, and it was my job to decide whether to go ahead.

I had no knowledge of coma. But, wait a minute! I had three experts right in front of me, so I asked-the-experts: "would they operate if it were their son who lay between us?" It was their unanimous belief that they "would" seek the operation for their own sons, were they in my position. And I wondered, frantically, about what my son would want.

The neurosurgeons said Nick was about to die - within the hour- without surgery. Even with an operation, it was most likely he will die. Some brain tissue may be removed and it may not matter if they do. And I may never know what Nick would want, although from the vantage point of a couple decades, I can guess what he would have wanted.

"Missing part of his brain, what changes will that wreak for his life? I had to wonder if he would outlive a coma, and if so, could he talk, walk, write, hear, see, carry on any good part of life? Will he be alive and aware, but unable to let anyone know? Did I just commit him to a sort of prison?" All these questions I wore like a straightjacket.

That marathon surgery lasted eight full hours, and by the end I was confident my son would live. The frontal bone flaps were cut out, and frozen. That left the forehead area unprotected by skull bone. Put your hand on your brow bone, flat-out. Stretch your middle fingtertip to your lejft temple area. Spread your fingers, extending the index finger to above your hairline (imagine a high hairline). Chances are you can't come close to touching the right temple area - clear to the right extension of the eye-socket, with the heel of your right hand. Now take your spread out hand down and look at it, and the area it encompasses. Now envision your missing skull piece - in the hospital freezer.

After a few weeks Nick gradually opened his eyes. You can watch the progress in my 1988, 1989 Blog illustrations at www.cogentadvocate.com.

Microscopic amounts of necrotic, or dead, tissue was excised during that initial major surgery. No one knew what that indicated for Nick. I vowed to do everything I could to maximize his chances of competence in as many areas possible. So when someone told me that dipping Q-tips in common household extracts, like cinnamon, and orange, I bought new bottles in Seattle, and began a regular regimen of dipping and placing the little swab under his nose, even while he was unconscious. And, of course, I narrated some recollections from his childhood to tie the scent into his memory bank, each day.

OTs and PTs came on the scene early in recovery. First came the hand and foot splints that prevented the gross muscle contractions that sometimes further disabled survivors of Traumatic Brain Injury. Then, before I had imagined possible, the PT sat Nick on the side of the bed. Nick made no response to anyone, but he sat there, tethered from his belt to the PT's hand. Soon the PT progressed to standing Nick, and then to transferring him to the wheelchair. Nick had said nothing at this time, not even when the PT began walking him, with my assistance or with the aid of a nurse or other therapist.

For two full months the injured brain could swell into the forehead space, It is startling for me, in hindsight, how calmly I withstood the trials of this period. When a friend inquired as to why the skull top wasn't removed, instead of just the forehead bone, I didn't reject her question. I asked the neurosurgeons the very same thing. Of course I was in deep shock, the initial icy shock compounded anew with each new gross insult to Nick's precarious life - surgeries, and codes.

One thing the staff never delivered, with the exception of the OT and the PT, was hope. How sad, when hope builds competence in family members. But medicos in the Acute Care phrase must be working on their own self-preservation, to not get their hopes up, or to seem too human to the families of their TBI surgeries.

Improvement was constant, although without my daily drawings during the deep coma stage I might have missed the signs. Before long Nick "qualified" for a tracheostomy - imagine that! qualifying, but it meant he had stabilized enough that the doctors gave him some chance of survival, so they made the incision in his throat and inserted a trach collar, from which he breathed, after the ventilator was withdrawn.

That trach collar was Nick's badge of progress. It meant he had graduated from ICU, to Acute Care floor. Rather than being excited that he didn't need so much care, I was frightened to think of him vulnerable in only an Acute Care room that looked like any other hospital room, although it was staffed exclusively by RNs. Evening I came to know some of them and found such confidence in their care.

I'm in the process of updating photos and text and will begin here, next session.

Right in the Intensive Care Unit I drew Nick, under the guide of "hope." When Matt, my 19 yr old son (sophomore at the U of W, or U dub, as the locals call it) and Jennifer, my daughter wanted to do something to ease the long hours I put in - all my waking hours. Via bus, they brought me an 8" x 10" drawing pad, and an assortment of all-lead graphite pencils (covered in a sort of plasticky paint), It was difficult to hold the tablet on my tippy lap, and the low vantage point was challenging, but not for long. One of the neurosurgeons sleuthily observed my work, across the room. His solution arrived in short form - an additional over-bed adjustable table, and a padded chair of the type they used to sit above the bed. That was truly an unexpected blessing

I surprised myself when, each day I taped the new day's drawing to the wall of Nick's room, across from the foot of his bed. After a few had accumulated I began taking the latest drawing to the apartment that was my hospital home. Intuitively I placed it opposite the head of my bed. Then when I lay down in a bedroom lit by streetlights, for a little reading, the drawing was staring me in the face. I could scarcely draw my eyes away from the artwork. I would stare for maybe an hour, at the image.

Each time it was shocking for me to confront the reality of what my life had become. I would tell myself: "yes, it's true, that's Nick lying in ICU, or in a coma, or with a trach, or uncommunicative." And each time the new little artwork helped to puncture the state of extreme shock from which I breathed and walked. I was too stunned to drive at all, and depended on Greyhound Buses to take me back and forth over Snoqualmie Pass, sometimes risking frostbite on my walks to, and waits for, the bus.

Accordingly, I wanted to give Nick some focus for his gaze, once his head could be elevated. He faced a blank wall, and soon it was covered with scores of drawings. It made evident the face of coma, as it lifted. Later on my favorite neurosurgeon remarked in a letter of recommendation for a national academic award, that all the staff remarked how no family member had previously shared such a personal account of their loved-one's progress on the Neuro Section of the Acute Care Floor. It was humbling, and I did receive the ALL USA Today Academic Team Honorable Mention 1989/90.

The rest of this series of drawings can be found at www.cogentadvocate.com

Matt took me out of the hospital for several late night photo shoots, each time with the temperature registered in the teens, down to the University of Washington crew area on the ship canal, where their rowing boats were piled high, making it scenic, lit against the black canal waters. We parked a few blocks away, and toted our cameras and tripods onto an I-5 freeway city overpass to learn something about photographing moving traffic, under darkness of night and bright streetlights, in the snow.

We thrilled to the Seattle skyline as viewed from West Seattle - a highly ranked tourist vista, but for us the highlight was that we could identify the hospital, sited high on the hill, known around here as "pill hill." There lay the focus of our lives, but Matt had returned to the U-dub for his Winter quarter; me - I was doing my Winter quarter artwork in the hospital! There was nothing like the harsh contrast of that dark night sky and the glare of streetlights, and finally, the soft bright white of the crunchy snow-coating on the ground beneath our feet.

I made my trek back-and-forth from my college home to my weekday stays in Seattle via national bus line. My first view of Nick, each Monday, caught me up on his status. After seven long weeks of coma his one fully open eye could see. I was convinced of this fact and made greater use of pictures and other visual stimuli. Even if he couldn't place the objects put before him, I could help him by identifying them and their connection with his life, even talking about his future. His Fall Quarter grades arrived while he was comatose and I kept them, still sealed, for him to open when he could fully appreciate them.

Nurses trained me to suction out the mucosal secretions that accumulated around the trach opening. Me, grossed out by most bodily secretions, I treated this task matter-of-factly, like taking I did baby-care when he was my first infant. So I kept the area around that trach collar clean and fresh as I could, to prevent germ build up.

Pneumonia did get the best of Nick more than once, heart wrenching periods when we nearly lost him, since he couldn't participate in the fight to beat the bacteria.

Another surgery inserted a shunt to drain the excess accumulation of Cerebral Spinal Fluid that threatened to squeeze his brain, lessening blood flow with vital oxygen nourishment for the brain cells. But not even the surgical pros had known what the results of that process of draining surplus CSF would look like.

I stood drawing Nick one morning of coma, but this time it was different. It's not that Nick slightly turned his head, but it's that I had to keep erasing the area around the hairline because I kept getting it wrong - I thought! What really happened was that the hairline was being drawn forward and down into a sunken area. There, right under my eyes, my son was changing. Draining the pond is a different thing when it is in your son's forehead. You pull back the cover, but you still expect to see a rounded forehead, but no, not here.

I stood at the right side of the bed and the depression wasn't overly pronounced, but Nick's head faced slightly to the left. I walked around the bed, and gasped. Apparently the bone at the left temple had been removed further back than on the right side. I saw a cavity that, to my estimation, could contain 1/2 cup of liquid or solid matter. A nightmarish day followed. Not one hospital doctor or nurse could educate me to understand how it was safe for my son to be in such a condition.

They turned him into a freak. Looking head on, you saw an irregular shaped, prominent brow bone, and his head cut off behind that, with the upper skull piece sticking up beyond the hairline. Finally, the intern answered my call, and remarked that -oh, didn't you know, that's because of all the brain they took out! For the rest of the week I greeted visitors at the door and took them back into the hallway to prepare them for what they would see, but still they were shocked beyond belief. For days nurses from other parts of the hospital entered the room, looked, and wordlessly left.

Those long weeks when no skull piece protected my son's brain under his forehead skin must have chopped years off my life. I remember climbing the five flights of stairs from the Cafeteria to the Acute Care floor, wondering where the food tray in my hands came from. Others kept on with their weekly routines and I did a solitary-soldier vigil, carrying on for everyone. No one asked me to do so. I couldn't stay away because I believed that I had a gift to give Nick, and narrated my life and beliefs to him, praying aloud for his recovery. I think that hearing the spoken word, conversations, and laughter in his room provided nurture he couldn't find on a radio station.

I shuddered and nearly gagged when a nurse applied pressure to Nick's forehead, pushing I thought, deeply, feeling his brain. Whatever for? I didn't ask, but I was horrified.

My marriage was nearing its end, by my choice, and our last family gathering was held at Nick's bedside. But I couldn't tear myself away from the bedside to finalize it, so remained separated for years. All hands-on work and consultations and decision-making fell to me. This was prior to today's cell phone era, and it can be challenging to make all one's personal calls on a pay-phone in the waiting room, so our communications were brief and treatment-oriented. It was challenging to convey my experience and discoveries when often they were so intuitive I struggled to find descriptive words for them.

We did agree on everything concerning Nick for the ensuing decade and a few more years, before disintegration of our guardianship consensus overtook the relationship. During the treatment phase the one thing I missed out on was true intimacy and understanding from a life partner. A dear friend did fulfill most needs for closeness and encouragement throughout my graduate studies.

I maintained the eternal presence with my son, always full of questions when the docs made their rounds, but still never quite obtaining their blessings for hope. But I was determined that no one would bat my ball of hope out of the ballpark, and when they told me that no one had any knowledge of Nick's real prognosis, I championed, to myself and friends, that I would take every opportunity to act as if my belief that Nick would recover was the real prognosis. I would treat him as if he took in everything he heard, so I asked the doctors and nurses to say nothing negative about Nick's condition in his presence. We had many discussions across the hall after that.

One morning I had an oil change done in Seattle, and sat in a nearby college haunt for coffee. Rain poured onto the parking lot right outside my window, and I felt like those were the tears I could never shed in Seattle.

Eventually it was time to obtain guardianship, according to the hospital - they all needed real authority, and since Nick was an adult, parental authority only went so far; they really were preparing to transfer my son to a nursing home, and after all the work I had done I couldn't bear that idea, but I did buy the idea of getting genuine guardianship powers. The hospital sat high on the hill overlooking Seattle's downtown. I remember clearly hiking down to the guardianship attorney's office, replete in my art-student turtleneck, jeans, and work boots. Following that morning's emergency, and ensuing personal trauma, I let the rainfall wash my spirit and refresh me.

Whether his eyes were open or closed didn't seem to matter. The doctors still planned to move my son to a nursing home. I was haunted by visions of moaning bodies, frail elderly folks crying out day and night. Smells coated my fears like moldy potatoes.

Before I left him that night I told Nick about the doctors' plans for him, and it brought tears to my eyes. He didn't respond in any way, so I left him with words that I meant to grab his guts and shake him. I told him he simply must give evidence to the doctors and nurses that he heard them; that he was shedding the coma state. Every day staff sought to elicit movements or comments from Nick - the "blink once for yes, twice for no," routine, that showed he heard, understood, and could carry out their commands. I told Nick that he needed to show the staff what he could do.

In my hosts' home, in the large bedroom they afforded to me through their church's connection with my dear friend in Ellensburg, I began a series in oil pastels, just for the purpose of documenting Nick's recent progress. Garish colors addressed the strife in my heart, as well as the ferocity of my hope. A large mirror reflected my own self, so I modeled Nick's latest finger and hand movements, rapidly marking on black drawing paper, another way of praying.

Next morning a note from his nurse told all comers that Nick had "lifted his bottom," for changing. Now, how cool was that! He followed commands! I was ecstatic, and from down in his depths, Nick had heard and responded, and so he was kept out of a nursing home - period. Staff and I were anticipatory of more signs, and we were rewarded.

That wasn't the end of it, though. Even though Nick eventually could sit in a wheelchair without his head being buckled against the headrest, sometimes, most of the time, he sat with his head hanging. It looked like depression, waking, and not really wanting to.

It was the lack of dignity afforded brain injured patients that shocked me the most. Nick was strapped into a wheelchair wearing a diaper and a hospital gown. The plan was to coax his body into a more normal position to stave off more episodes of pneumonia --- and to help keep his lungs free of fluid and mucous accumulations. But I couldn't get past the lack of decorum. At least put a pair of pajama pants on him.
Those blessed neuro floor workers couldn't be faulted. I never once thought they did anything but their best. When they failed to dress my son in pj's they were tending to a crisis for one of the other comatose patients. Lord knows, they all came running when my son's alarms went off.

An Occupational Therapist had treated Nick since soon after his surgery, to prevent contractions in his arms, hands and feet. She constructed individualized splints and thanks to her Nick's arms and feet remained correctly positioned. She manipulated Nick's fingers and told me about a P.T. who had helped to bring about some outstanding improvements in other comatose patients. When she asked I jumped on the chance to have him work with Nick.

With a blanket draped over Nick's lap the gentle P.T. asked me to accompany him as he took Nick for a wheelchair ride. He told me there were things I could do to help Nick regain his strength, even though he was still very much in a coma. Whack me with a noodle! I didn't know comatose people could move, apparently with purpose.

Carlos talked to Nick in a soothing gentle tone. He sounded as if he already knew Nick, orienting him to day, date and time, and reminding him that I was there. He talked about the hospital, the room, the window, and objects he wanted Nick to touch, and finally, pick up. Then Carlos asked me to place my ear within a few inches of Nick's mouth, and asked Nick to say "Hi Mom" - which he did!!! Tears still come when I think about that moment and a man who stepped out of his P.T. box and placed a mirror in front of my mind's eye. Although I'd never heard of mirror neurons mine kicked on during that demonstration of how to elicit behaviors in a TBI patient.

Still, the picture of Nick was something that pierced me to the core. I took a photograph of Carlos continuing to work with my son, and then worked on an oil pastel rendering of the experience, when Nick eventually got into coma rehab. I purposely chose the colors for their garishness in combination.

I continue to believe, as I did at the time, that Nick was in need of advocacy throughout his hospitalizations and rehabilitation stays. Had my son been the doctor's son, he would have had medical expenses extended as a professional courtesy or readily paid by excellent insurance coverage. The doctor would not have had to fight to get his opinions respected.

Rehabilitation program physicians would not have pulled rank as they did with me. I advocated for stimulation, recognition of pneumonia and unsafe restraints as well as onset of bladder infection, monitoring to prevent trach blockages, acknowledgment incidents that demonstrated ability to listen and follow directions.

It was just a Gotcha Game for the claims agent from my son's health insurance company, when I made the phone call - the plea from the mother of a comatose young man, the plea our attorney ask me to make.
The agent became combative, with a jocular tone to his voice, as he uttered challenge after challenge. Yea, but! Well, maybe! Oh, sure! We're not responsible!
Can you prove that your son was not on his way to commit a felony??? echo echo echo
Stunned, stupified, breathless, I choked over words that tumbled out of my mouth. How could I prove a negative? What would happen to Nick? What kind of future ridicule was I in for?
Nick was on his way home with a friend on the back of his small motorcycle, with one six-back of bottled beer in tow, on the way to an evening of singing, accompanied by his friend's guitar. Nick and Grace were buddies and they decided to celebrate the end of Fall Quarter by performing a little concert for the two of them. Then the next day he and Matt were heading my way for a family Christmas celebration.
Fortified by a huge gasp, I gave him a few words of my own, and he concluded the conversation by informing me that the company would begin paying the bills.
I melted inside as I hung up the phone, at the inhumanity of the person and the company and the business arena, for it was truly a battlefield for people like myself who were only claiming that which they had already paid for, in a time of calamity.
Without that insurance Nick would be shunted off to a nursing home and now I carried the knowledge of his coverage, and the means by which I held the insurance company accountable, as a badge of courage.
It was simply not ethical to refuse to treat, or to refuse to pay for the treatment of a person so badly injured, yet forced to live. Our very elemental ethos of treatment and care is based on a recognition of the humanity of persons, at least that is my personal ethos. for your insurance premiums now we need you to provide the coverage we have paid for, all these years."

Sometimes it feels like intuition based actions are nothing but rubber bands stretched so tight they will snap and sting you on the return. But mostly it feels right, as if I tripped and fell just like a child unfamiliar with uneven ground, and I pick myself up again. My mantra is "ask yourself if what you want is for Nick's benefit or for your own self" and that gets me on my way to share some observations about his latest words or activities. Like the moment when he picked up the marker I'd placed in from of him with the suggestion that he draw the subject of our conversation - and he did!

In my hosts' home, in the large bedroom they afforded to me through their church's connection with my dear friend in Ellensburg, I began a series in oil pastels, just for the purpose of documenting Nick's recent progress. Garish colors addressed the strife in my heart, as well as the ferocity of my hope. A large mirror reflected my own self, so I modeled Nick's latest finger and hand movements, rapidly marking on black drawing paper, another way of praying.

Next morning a note from his nurse told all comers that Nick had "lifted his bottom," for changing. Now, how cool was that! He followed commands! I was ecstatic, and from down in his depths, Nick had heard and responded, and so he was kept out of a nursing home - period. Staff and I were anticipatory of more signs, and we were rewarded.

That wasn't the end of it, though. Even though Nick eventually could sit in a wheelchair without his head being buckled against the headrest, sometimes, most of the time, he sat with his head hanging. It looked like depression, waking, and not really wanting to.

Again I diverted focus from my own life, to devise and implement a plan of action for Nick's immediate future. He was about to be ejected from an inpatient rehab because he was injured so severely that his slow & steady pace of recovery didn't meet the Insurance Company's requirements for the very treatment he needed. The doctor had allowed me two to four weeks to find a place for Nick. His father remained in the unfinished family home in a beautiful but desolate area of north central Washington State, far from any rehabilitation resources. I lived in a miniscule college duplex which would not accommodate a wheelchair even if my daughter had not been due to move back in with me in a week's time. For five days I searched the town of Ellensburg for a house or apartment, conferred with DSHS, Independent Living, realtors, friends, nursing agencies, an attorney in trying to line up a home-based rehabilitation plan.

Nick was badly in need of cognitive rehabilitation in addition to Occupational Therapy to relearn skills of daily living, Physical Therapy to regain mobility, and Speech Therapy to improve voice quality and cognitive skills. He needed 24hr nursing care and psychological intervention to aid in recovery of self-awareness of impairments and deal with issues of emotions and self esteem. At every turn I was told that this had never been done before, and Good Luck. Our only alternative to keeping Nick out of a nursing home, where he would need to be sedated and physically restrained to prevent his eating non-food items and accosting other patients with sexual invitations and aggressiveness, seemed to be for me to provide some type of living accommodations. University Housing did agree to rent the unit next to mine to house Nick and his caregivers.

I exhausted every avenue of exploration when I finally realized the insurance company would never pay for the nursing care at $6,000 per month alone. Still, I returned to Seattle determined not to give up. I received from the doctors a letter affirming their position that my in-home care plan, though unorthodox, was the best plan for Nick's immediate future.

Money, our profit-based medical insurance system, set the price on my disabled son's life.................and it was very low.

Nick's next move, July 31st, was to a rehabilitation center that specializes in brain injury cases, and touts themselves as "the experts". They provided one-on-one nursing, and reassured me to the point that I left for home content that this was the best place for my 22-year old son to be. A week later, during a phone conversation with the staff psychologist, he told me he wished he could get me to do an Inservice with his staff, and with family members of TBI patients, who would benefit from knowing how arduous it was to surmount obstacles, how far my son had come from the early prognosis, and to share examples of persistent advocacy. Talk about values - the rehab spun me around the next week.

I was aghast when I returned to discover that not just the one drug-trial, which I had approved, had been tried, but an additional two and Nick was obviously still under the effects of an unwanted antidepressant. Not only the drugs --- but he was locked into a wheelchair and tied to the hall railing across from the nurses' station. He was extremely restless, disoriented, slurred of speech, completely turned around from the confidence of the first week.

With that experience I lost trust in the program and decided that though they were good listeners the follow-through that indicated was a figment of my imagination. Nick was nobody's experiment. I resented him being seen as such. The neurosurgeon's words 12 hours after the accident: "if he were my son, I would operate" kept winding in and out of my mind I though that he was familiar with the rehabilitation system. Somehow I thought there was a rehabilitation system, a continuous flow from ICU through Community Re-entry.

Since Nick had half a million dollars of private insurance coverage, and had only used half of that in six months, I thought he was assured of the best of cognitive rehabilitation too. I didn't think we would have to fight any battles with the government to receive adequate treatment because Nick was paying his own way. I was wrong in every concern regarding rehabilitation.

Today I visited Nick at the rehab, where the rehab doctor informed me that they were discharging him the next day. She assumed I would take him home with me then. She glared at me when I told her there was no home to go to. She allowed me three additional days. The following Monday I arrived for a visit and passed the doctor in the hallway. She called me aside with the cryptic tone and comment that she "thought Nick had already left." I informed her of the progress made in locating a suitable situation for him, and gave her a more realistic discharge date.

What were they going to do..................put him out in the street. In the past seven months I've learned that a parent who speaks with a voice of authority is like honey to the ears of medical staff because it eliminates easy outs and helps them formulate their plans as well. It helps them remember that it is the best interest of the patient, about which we speak.

I received the second rude slap of awakening to the realities of insurance coverage. It means the insurance companies cover themselves, if they can help you without suffering profit loss. Rehabilitation facilities are kept in business by payments from private insurance companies. There is no system for rehab other than that stipulated by the insurance companies. The patient must maintain an arbitrarily determined rate of progress or the company will refuse to pay.

The rehab center must be paid or they will go out of business. Both businesses must follow good business practices. But regaining conscious awareness does not follow any schedule; it does not know anything about financial management. It is simply the sprouting of tender young tendrils of new life reaching out for contact with the world it once knew It needs the nourishment of continuous, confident encouragement, at its own rate. It stinks, this shock of learning that no options for life post brain-injury await the very severely injured but ambulatory person.
Ellensburg, where I live, does not have a three-bedroom house or apartment to rent and Nick's dad and I agonized over the dilemma and finally decided to take him to the home we built in North Central Washington. When I recounted this part of the story to staff at the Washington State Head Injury Foundation they asked me if I didn't want to go home with Nick. For me it wasn't an option because I feared that thorns from my marriage would grow again, and once I had left for college I experienced the seemingly boundless joy of learning at the university level.

Matt, a university junior, scheduled a Quarter's leave from college to be Nick's constant attendant. Matt has only been at the University of Washington for two years and it seems reckless to me for him to suspend his education when he was just getting going. The two capable men have no idea of what they are getting themselves into. Against my better judgment I agreed to the arrangement because none of us could see a way out of sacrificing Matt's college year. My school year was still a few weeks away so my dear friend Kurt volunteered to provide for Nick's transportation back to the house Nick had helped build. We anticipate that the setting will have positive effects on Nick's memory. Our family had been still living in tents in a campsite above the homesite, when Nick's senior year of high school began. Nick was a trooper, helpful, ambitious, up at the crack of dawn, and ready for an outdoor shower even with snow on the ground. All the family was tied to that house we worked so hard to build.

An uneventful ride in Kurt's trusty Honda Civic with Nick in back far away from the radio dials, and me as navigator, lasted seven hours. We managed a few rest stops and lunch in a cafe. Nick remained cheerful, but kept up a non-stop chatter, repeating and questioning until he fell into a blessed nap. Matt welcomed us home, and took us all on a tour of the house and grounds, explaining his plans for coping during the long days to come. My heart squeezed tight at the sight of Matt, and listened to him talk about his valiant intentions. I relished the stunning panoramic vista from our homesite ledge, and yearned to call it my own again, but I was not equipped to deal with a young man whose thinking was compromised, as memories of those 'pows' to my face, on that lovely Sunday afternoon at the waterfront, flooded over me.

Dinner over, the night's schedule was laid. How surreal - me alone, back in the marriage bed, Nick in a single bed in the unfinished master bath, their father elsewhere, and the guys bunked downstairs. Our family was Catholic but for the most part none of us were practicing at that time. I had been leaving the Church for years, quietly distancing myself from practices I found incompatible with my need and desire to pray directly to God. Had we been prayerful, this could have been a profound opportunity for joint supplications, asking for blessings on what would surely be a nearly insurmountable task for the untrained. But we kept silent, each to ourselves.

Insisting that Nick help make the next day's lunch, Matt assigned him the tasks of counting and laying out the bread slices, buttering the bread, setting the table and slicing the carrot sticks with a big butcher knife. Even I hesitated when that charge was made, but I deferred to my second son's determination to make things work. Matt had a knack for winning people over to his mission, whatever it was, and Nick did fine with all the tasks, astonishment all around!

This was the same young man who the three rehabs had kept strapped into wheelchairs as a way of confining him, until Kurt and I unstrapped him and Nick walked to the car the previous day. I wondered what they would think if they had seen Nick today. After lunch we all went outside to help Nick get reacquainted with the horse he had owned for eleven years. Nick reeled in fright when the horse advanced; he never regained his former innate easy way with horses.

After leaving the rehab in September and going to live with his father my son was scheduled to spend every other weekend in my apartment. By this time he was ambulatory. On the first visit my world turned upside down. Because his appetite is insatiable, and my living room and kitchen were one, I could not remove him from the food source. A close friend enclosed the refrigerator and food cupboard handles in bicycle cables and locks, two around the refrigerator. Nick's hunger drive is powerful and he was able to stretch the refrigerator cables with a mighty shout, allowing access to unlimited eating. He grabbed a cereal bowl and dumped in everything from cheese puffs to cereal to leftover casserole and poured milk on top. Then he yelled: "get out of the way" and took it to the table where he attacked it with gusto, looking up only to growl threateningly at me. I stood there in disbelief at the rabid change in my son over the first month back home.

I emptied the refrigerator into a cooler chest and took the food to my brother's house, about half a mile away. They brought some prepared food to me for placement in my car's trunk, to bring out at dinner time. My nephew's lovely golden retriever sat down at my son's knee where we sat on their patio, all of us unaware that he was half a second away from a painful pinch to the ear. Embarrassment choked me, and I rapidly left for home.

Getting out of the car Nick became increasingly agitated - demanding, and verbally abusive once we got back in the kitchen. Aware that I had removed the food he directed his threatening words and actions at me. When I sought refuge in the bathroom this heretofore-gentle survivor pounded on the door in rage. Thinking that a walk would help him burn off some energy I suggested such, only to be met with refusal. He did go outside, so I went along next to him. He held my hand as was normal because he was not yet confident walking outside. But I was unprepared when he turned into my neighbor's drive, letting go of my hand and instructing me to get out of his face. He opened the door and climbed behind the wheel of my neighbor's car, ignoring my imploring that he respect the owner's rights. I coaxed him out of the car with a stick of gum.

Then Nick noticed my neighbor's apartment door was ajar and walked straight in. He entered the living room and sat down and picked up something of hers. Shocked to hear us in her apartment she came out and reached to retrieve the box. Nick angrily grabbed her hand, squeezed and scratched her wrist open. Then he got up and went in search of food. She was scared and retreated out of sight, while I offered him a piece of bread from a plate on the counter. I fearfully told my neighbor to lock the door. Nick replied: "if you do, I'll beat it down!"

Nick had first threatened me and refused to cooperate early on Saturday and I promptly called his father who said it was up to me and to call Crisis Line if necessary. Matt was unreachable in Seattle, not due until Sunday evening. Resourceful and positive as I tend to be, I wavered between fear of the immensity of the situation of no longer being able to control a TBI survivor with verbal persuasion, to confidence born of naïveté. Sunday morning he arose wet from the bed but refused to shower and insisted on sitting on the furniture in that condition, heaping verbal insults on top of my bewilderment. Fear rode my shoulder the rest of the day. I called the rehabilitation hospital that had discharged him two weeks earlier, to reach his doctor. The nurse I spoke to recommended taking him to local hospital emergency room, saying she would try to locate the doctor and give the number to the ER doctor when he called. Or, I could call 911 and have him taken away in an ambulance.

Fear of the additional trauma to my son, that would result from his being put into restraints in the back of an ambulance, I decided to risk the drive to the hospital myself. Nick accepted my invitation for a ride, and became angered when I refused to stop for food at one of the drive-ins or groceries we passed en route. I distracted him with gum. Then we spent a calm hour waiting to be examined while other patients were seen. I explained to the nurse that I wanted the doctor to contact the rehabilitation doctor, that I had in hand Nick's medical file with all the surgical reports and evaluations from all the hospitals, including drug information. Because of the severity of the situation, that he had already scratched my neighbor and repeatedly threatened me, I wanted a sedative that would calm him while I could ascertain the best plan of action.

I asked for a confidential meeting with the doctor before he examined Nick. I had the Guardianship Letter with me. I met the doctor, explained the circumstance and asked him not to tell Nick why he was there (that is, that I was afraid for myself and for others) but to please contact the other doctor, offering the file. I told him Nick had had a focal seizure the previous Friday. He ignored every request, asked inappropriate questions because Nick had no understanding of focal seizures, though he had had many. The doctor told Nick he understood that he was uncomfortable with the thought of driving back home with Matt.

Oblivious to the doctor's statements Nick went out and sat down in a wheelchair and began wheeling himself about the halls. The doctor came into the hall, saw Nick, and in an angry voice ordered him back to the waiting room. This was precisely the type of confrontation I had told the doctor I was concerned about. Nick used a four-letter word. The doctor escalated his tone; Nick raised his finger and used profanity, all while he sat in the chair.

The doctor stroke up to me, bent to my face and said: "if he becomes violent here you know what we'll do, don't you!" I replied, "Sure, you'll put him in bed in restraints and sedate him." "No" he growled back "we'll call the police and send him to lock up! We don't have mental facilities here." I told him: "this isn't mental illness, it is brain injury." He disappeared into a room off the hall. That threat from the doctor brought that crystal dome back down around me, only not before fear coated my skin. In shock and disbelief I asked Nick to go for a walk with me and led him straight to the car for another piece of gum. That weekend was my first experience of fear with Nick, and it was never ending. Here I had risked the drive to the hospital only to have things made worse by the very doctor who was supposed to help us, and I chose to drive again with him to prevent any chance of having the police called.

I pulled out a stick of gum and coaxed Nick out of the wheelchair and we walked back to my car. The last thing a brain injured survivor needs during his rehabilitation is to spend time in jail. I was afraid of Nick's continued threats in the car, but more afraid of the visions of him being cuffed and transported like a criminal, like an insane criminal to the county jail where no one would have any reason to understand what it was that was making him act so.

I hoped that a full stomach might be a diversion, so we could change the atmosphere. Nick demanded more and more food. I finally took the locks off the cupboard so he wouldn't break the doors and he poured cheese puffs, popcorn, apple slices, celery slices, carrot sticks, zucchini chunk and various cold cereals into a bowl. He topped it with cut up tomatoes and still called me names and issued warnings. He grabbed and shoved me. He was out of control. I feared for the four-hour drive home in Matt's tiny car. I had to ask the other neighbor, across my driveway to please stay inside her apartment and to not talk to Nick when he went outside again.

Kurt, who was a graduate student in psychology, came over to help me. I phoned 911 to talk to a mental health specialist to get that person's help in connecting a local doctor with the rehab doctor. He refused to help, saying Nick should go home with Matt when he arrived. duh! I gave him the rehab phone number, doctor's name and asked him to please call and tell the doctor what I had said, because the rehab staff would not divulge the doctor's number. He said he was at a picnic and didn't have a way to pay the long distances charges other than out of his pocket. I called the physician I had seen at the university health clinic because I had known him for decades, as our children are of similar age. He refused to help. I was in tears by this time because I had believed that 911 meant emergency help and I was repeatedly turned away. The system didn't have a provision for us.

Kurt called a mental health worker he knew through college and she talked about calling 911 and requesting an ambulance to take him to Memorial Hospital in Yakima because they have a psych unit. She said there was nothing else that could be done. I told her if she could find out a place for me to take him, where he would be seen by a doctor, I would bring his files and him and go anywhere - anywhere. She knew of no resource.

By the time Nick insisted on going outdoors, I had been standing outside my door in the 90 degree sun holding the phone and taking and making calls for several hours, while my friend stayed inside with Nick. I realized I had to call the ambulance, because I could not risk my dear son's hurting someone in an attempt to get food or something and having the police called, and having him sent to jail. The operator did not understand my request and sent police cars with lights blinking.

I asked them to please leave, walking up across the driveway, facing their drawn guns. I explained the brain injury and how their presence was inflammatory. An officer ordered another to stay right on Nick.

My friend attempted to explain the situation to the officer. The ambulance arrived, and an aid car. I walked right over to their door and explained the situation to the driver, pleading with them to call off the police. They were most sympathetic and told the police they could go.
Three cars left and a fourth pulled up and demanded of me an explanation, and my name, refusing to leave until instructed to do so by a medic. I immediately asked the driver to send the officer away, and he did. It was many minutes before the officers got inside their van and drove a few feet off, and another ten before they left.

The medics were quick to comprehend and helped us explore alternatives to hospitalization. They explained that if they did take him in the ambulance they would have to leave him with the doctor we had already seen at the community hospital. Then he would go via another ambulance to the Yakima psych unit. He would be hospitalized for a minimum of two weeks. A rehabilitation social worker called and said under no circumstances permit him to be taken to a state mental hospital, as has happened to their former patients whose family members have related their sad stories to her.

We kept discussing it, looking for alternatives when I remembered two codeine tablets in the cabinet, left from some dental work. I was afraid to give the codeine for fear of what effect it could have on an injured brain, but went ahead. It accomplished the desired effect of slowing him down to point where he was drowsy. He lay on a blanket on the front lawn while I sat in a chair and talked. I gave him some seltzer and cut up apples. And that is where he stayed for the remainder of the afternoon, until Matt arrived - pumped from his social weekend with his university buddies. Nick followed Matt inside, and started Matt by greeting him with an epithet and accompanying fire in his eyes. After thoughtful consideration of the change in his brother Matt decided to risk the drive home. Nick was worn down from the sedative, and satisfied with the three packs of gum and bottles of seltzer water I sent along for the trip.

Disbelieving the extremes to which the situation had come today, I spent a couple hours restoring order to my apartment and called my daughter to tell her it was safe to return home. I felt like I had walked through Hell and I realized with emphatic clarity that I wished I had not given consent for that original surgery. No one along the line had prepared me for violence. I knew no one could read the future, but when I called on the system for help it refused. From the beginning of the visit, on Friday night I was in contact with Nick's father; I tried to contact the last physician who had treated him and was very familiar with his care; I followed the advice to seek the local Emergency Room; I called the county mental health professional for assistance; I called family and friends; I called two local doctors who I personally know (one was not at home); and finally I called the number of last report, 911, to ask for an ambulance ride to commitment in a mental health facility, even though I knew to my core that it was not appropriate for a TBI survivor.

I did it because he was so out of control, I feared for Matt, my neighbors and myself. I hadn't remembered yesterday that somewhere in my medicine drawer I had two codeine tablets. I love my son. I gave my life to him these past nine months. What more could I do. My daughter could have told me how much she too needed her mother. Why hadn't I thought of that codeine earlier, like yesterday? I know why; I had heard that some drugs cause adverse reactions in brain injured persons and I wanted to avoid further compromising my son. He lay on a blanket on the lawn, under a wide branching tree, once I coaxed him out of the car with a chip and the drink.

Nick's verbal and physical insults, to his brother and father continued for a few days, then a gradual recovery of calm began. Peaceful periods were punctuated by spontaneous outbursts, threats, cursing, and weak efforts to strangle people who were in close proximity to him. After three-quarters of a year confined to a wheelchair, and two months ambulatory my son had lost his buff body, and was weaker than your average child. It was scary to feel hands on your neck, but the grasp could be broken just with a few fingers, so no actual threat existed - tell that to my bathroom door! - but to our psyches that were still in the lingering shock stage. Attempts to get food, whether in the kitchen, a restaurant, a store or the gas station mart demanded, and still demand, hyper-vigilance to prevent agitation and an unknowing stranger's phone call to the police. Injury to the hypothalmus interfered with the natural satiation response to food consumption.

Sounds innocent: "I'm hungry" "But Nick, we just got up from the dinner table". "I'm hungry," ad infinitum. I remember seeing posters, billboard, and public service television announcements along that theme. The uninitiated might reassure the injured person that "he did eat", but memory impairment means that the thought may not last much longer than the time it takes to say it. It can take mighty fine strategy to ensure that nourishing food is available at the proper times and that it is out of sight at other times. Engaging Nick in physical and mental activities has a powerful effect in focusing his concentration, displacing the ever-present hungers. That demands its own set of skills.

Preparation for this hearing on a bill to reenact the state law that requires the wearing of motorcycle helmets occupied most of my winter break from graduate school classes. Which crisis to tell - it all blended together in one swirl of foreign existence. Typing and retyping brought back to life the fearful plight of my son, making it impossible for me to know which event would speak most effectively to the need to prevent Traumatic Brain Injuries caused and made worse by the lack of use of a motorcycle helmet.

Nick had a helmet. He wore it for every ride back home in Okanogan County, but he set good sense aside for the short rides from his apartment to his classes across campus and to the grocery. He and a girlfriend went helmet-less for the critical ride that winter night. He planned to sing to her accompaniment on the guitar when they arrived back at his apartment, with a 6-pack of bottled beer secured onto the bike. Doctors said he would likely still have received a TBI, but less in impact.

The Executive Director of WaSHIF (Washington State Head Injury Foundation) had asked me to testify in this hearing put together by the Department of Neurosurgery at Harborview Medical Center. As requested I faxed my 20 page document to him for editing. He cut what I thought was part of my real contribution to the subject, identification of the rehabs tie-in to control by the insurance industry. (At the time I could hardly forgive him for discarding those sections because cause and results were like opposing sides of a rubber band that expanded and closed in on us, but of course it was the wrong hearing for covering the insurance industry's stranglehold on all things healthcare.)

Tony met me in the Legislative Building and accompanied me for the procedure. I was unbelievably nervous, but well practiced with my 3 page testimony, simply unprepared for the video cameras and the motorcycle riders' association members (who, it turned out, are genuine and caring individuals). I told the assemblage about the injury, the surgeries, the costs, the deadlocks with insurance and expulsions from the 3 rehabs, and trials at my home and his father's home, and above all of the refrigerator experience. Two weeks later I was called back again, after that they dubbed me "The Refrigerator Lady" and passed the legislation.

At my 1990 BA Commencement ceremony at Central Washington University, David R. Boyd, Distinguished Alumni Speaker, narrated the course his work towards establishment of a nationwide chain of state Emergency Medical Systems. I was thrilled to receive my degree after having mostly raised my children. It was a break in the focus of my work to bring meaning to my brain injured son's life, to celebrate my accomplishment.
I looked forward to receiving inspirational messages from the speakers and was taken aback by this one. His accomplishments dwarfed my concerns about the dignity of a life lived after rescue from death on the pavement. My son was forced to live and one of the persons greatly responsible for this was on the podium.

The challenges I met daily, in Nick's name, threatened to divert my commitment from entering Graduate School, with the intention to obtain a Master of Fine Arts in Painting and Drawing, to changing focus and seeking a profession in Occupational Therapy, so I would be an insider or at least a peer of the professional teams that ordered Nick's retraining in life skills.

Dr. Boyd's accomplishments enveloped me with a coating of Awe, and a dusting of gritty discord. He advocates, and we in society in general cause/force those bodies back to life when we fund the EMS, but how do we live with ourselves when we realize that after the bodies function again (or mostly function) the mind may require lifelong tending and mending, but we don't now fund that. Once I witnessed the results of the brain injury I understood all too clearly how disastrous it is to compromise brain function while elevating physical body function to the standard of accomplishment. Living with TBI seemed to mean only living through the courtesy of others, if they wanted to take on our cause.

I deeply admire such a person as David R. Boyd '58 graduate in psychology, with a BA/S degree from CWC/Education in Ellensburg, WA, a medical degree from McGill University in Montreal, PQ, CA. Dr. Boyd "headed the governmental drive to create a system of effective emergency medical care across the nation drafting landmark national legislation leading to the Emergency Medical Services Systems Act of 1973. On November 18, 1998 in Washington, D.C., Dr. Boyd was honored at the American Public Health Association meeting. He received the Distinguished Career Award from the Injury control and Emergency Health Services Section. Dr. Boyd was appointed the National Director of the Office of EMS Systems in the Public Health Service, Department of Health and Human Services, where he established a lead agency for Trauma and EMS systems in every state and many local public health departments." http://www.cwu.edu/~cots/alumni.html

I deeply admire him. At the same time I know that in some ways we, as a nation of states, put the cart before the horse when we concentrated on maintenance of the life of the body at the possible sacrifice of the life of the mind, or to put it another way: we failed to educate the tax paying public about the frequency and severity of TBI in all its manifestations, when we enacted the laws that created the EMS that all too often "create" the new forms of personhood, that may require lifelong support that is not in place without increased legislation and funding.

So, I left my Commencement all fired up to develop a stronger form of advocacy, continuing to combine my written and spoken word with the visual language of my artwork.

Acute care and rehabilitation services are frightfully costly and most TBIs happen to children and youths, the latter in motor vehicle accidents. Often youth are not covered by medical insurance, plummeting them rapidly into the Medicaid system.

Many adults who engage in especially hazardous work and play bypass insurance, and again immediately need to access the Medicaid system in their state, to get their life-saving and rehabilitation expenses paid.

Although my son was still covered at the time of his TBI (at 21yr) on our family policy, he was also so badly injured that 18 months later he still required residential rehab, at $35,000/mo. His first rounds of hospital stay were more than $35,000/mo.

The first rehab cost $25,000/mo; the second, third, and fourth rehabilitation programs cost $35,000/mo each, and our policy - marketed to rural small business owners - the whole group policy was cancelled as I was planning his move to a $15,000/mo program that was out-of-state. The insurance company's claims manager informed me that it was due to my son's TBI needs that they cancelled the group policy.

Nick was out-of-state; I had just begun graduate school, and I had to get him covered by Medicaid, pronto! More about that at my blog COGENTadvocate.com, where you will find regulations and law links that apply to your loved one's access to services.

Early on I learned that state workers are just like us: they want to do their jobs well, and often their job has not educated them to smooth the way for TBI families, but more and more workers are getting that education, especially since so many American Veterans return with sequelae from combat caused TBI. It helps to expect the best in your future relationship with state workers.

It soon became evident that agencies are organized around service-provision, although at times that may not be evident. Start from a point of view that assumes your workers (many of them, social workers) want to help your loved one attain the highest level of functioning.

Remember that most of them are unfamiliar with the needs - and capacity for learning - of brain injured persons, like most of us likely were prior to the TBI. They appreciate it when we do the legwork to locate the right match of services with our brain injured family members.