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April 23, 2011

Neurogenesis Happens: Hope in the Month of Hope

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There are stories written about the challenges of raising teens, and I will confess, I tire of these stories, until today, when I was about ten seconds from assaulting a load of laundry, and realized, yes indeed these stories need to be told, so other mothers suffering painful ordeals know they aren’t alone. What is it about teen males that can render your home a place where you can seldom relax? Constant shouting (apparently years of teachers telling boys to use quiet voices has had little affect). Clink. Slam (apparently endless home instruction about not slamming things has also had little affect) “Dear God, what are you doing down there?” I implore from upstairs. “I can’t find the safety goggles,” shouts my teenage son. It’s been 67 minutes since the initial time I asked him to fire up the weed-whacker. “They’re in tool shed,” I say. “I can’t find them!”  “Look harder,” I advice. Ten minutes later, “I still can’t find them!” As I fold a shirt (his shirt no less), “Use swimming goggles, use sunglasses, use whatever, just handle the situation!” Two minutes later. “MOM!” Startled, I stretch a sock. “What!!!” “I need to wear cargo pants when weeding.” A simple word of advice: “Put on cargo pants.”  “I can’t find any.”  “Then wear sweats, pajamas, boxers, your sister’s dress…  I don’t care what you wear begin your chore.” Minutes later. “MOM!” “WHAT NOW!”  “What weeds do you want me to cut?” 85 minutes ago, I had pointed out exactly where and what invasive plants to whack “Just whack every scrub that stands in the path where nurses walk your brother!” I yell. (Home health nurses walk our autistic son, Jamey, around property as part of his behavioral and medical care plan). “Okay,” he says. This is the same teen who, while watching movies, will tell you how someone is feeling. And why they are doing what they do. And inevitably, he ends up right. Meanwhile, crash, bump, clink….. as my other teen son is ascending stairs holding a bucket…“MOM?” “Right in here,” I say. “Look at this” he says, pointing to his white shorts. “Every time I wear white shorts when I’m washing the car they get dirty!” I am about to say, “THEN DON”T WEAR WHITE SHORTS”. This same teen is the teen that memorizes history books, can recite complex military concepts and draws intricate cities with dazzling details and dimensions. And from poems and stories he’s written, appears an excellent writer. I guess my point here is that teens, despite alleged faulty frontal lobe firings, are far more advanced than we adults, in our stressed out, short-circuited, often myopic minds, have appreciated. Bottom line: the human brain is an amazing organ.

This leads back to my severely-autistic son, a non-verbal, lower-functioning 22-year old, who for the greater part of his life, has been plagued by severe self-injurious behavior and episodic seizures and has shown slow improvement---until NOW (which I’ll go into in another Blog posting later). Recent studies show exciting promise. For instance, during teen years into the mid to late 20s’, the part of brain called PFC (pre-frontal cortex), continues to develop and can form new cells and strengthen connections. Naturally, proper diet, exercise, stimulating settings, specific pharmaceuticals, vitamins and little miracles God doesn’t show us, probably have a lot more to do with this than we’ll ever admit, but the point is, this is good news! It gives HOPE to where there was hopelessness. Healing to where there was “his brain is screwed up, just take him home and give him as much care and love as possible.” (Yes, a doctor once told me this after I’d asked if he’d ever witnessed adults with severe autism improve---as if I should just give up trying anything new and prepare for hospice.)

Ok, you’ve heard that once brain cells die they can’t be reborn, right? Wrong. While it’s true cells die, and stay dead in SOME parts of brain, neurogenesis (birth of new brain cells), happens in hippocampus, olfactory bulb and—quite possibly—cerebellum—well into old age! That means there are plenty of things to do to promote neurogenesis. Likewise, pharmaceutical companies have developed and are developing drugs that promote neurogenesis in target areas of the brain. Now that is good news, and God knows we all need more GOOD news. Happy Easter.

April 15, 2011

Anti-Psychotics and Other Medications for Autism and Chronic SIB

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Let me say this about anti-psychotics in the treatment of autism and chronic self-injurious behavior (CSIB): They seldom work. Why? Anti-psychotics attach to multiple “receptors” in the brain. Each “receptor”—as if God did this to show us who’s really in charge, has subtypes--- all with unique mechanisms of action. For additional ego-crushing lessons, God created neurotransmitter systems (histamine, adrenergic, dopaminergic, etc) that may cross talk and recruit each other. Hey, you, D1, yea it’s a2, activate, researchers closing in. Hurry! Tweak your mechanism of action and show low affinity for incoming agent.

For years, researchers have been obsessing over how to treat SIB. Well, Ok, I don’t know if they’ve been obsessing, but if they haven’t, they should be. Obsessive people get things done.

Anyway, one the things that research shows is Dopamine (mainly D1 in corpus striatum—an area rich in receptors) dysfunction is implicated in chronic, refractory SIB. In case you’re wondering: There are no pure D1 antagonist drugs for clinical use in USA.

Consequently, psychiatrists prescribe multiple drugs to target SIB. Problem is, “Overblocking” or “underblocking” one receptor can throw brain into reverse, neutral, forward, or all three, within hours, depending on onset, peak and steady state of drug, and interactions with other drugs taken.

Don’t panic. It’s not hopeless. Finding synergistic (where all the receptors play nicely together) combination involves a LOT of cross-analysis, adjustments, trials and errors. It may take years. It may take weeks. Whatever it takes, don’t give up. SIB has to be STOPPED.

Atypical Anti-psychotics used to treat our Son’s Autism and Self-Injurious Behavior (SIB):

 DRUG                    What Happened After Drug Given              

1. Haldol:           Retrocollis, oculogyric crisis, laryngeal
                                        pharyngeal Dystonia. Increased seizures.
                        Not effective on SIB. Given @ hospital
2. Risperdal:         Slight reduction SIB, slight increase
                          Seizures; Tongue paralysis & tremor

3. Geodon:             Little effect on SIB, restless, crying,
                           Confused look on face, possible drug-
                           induced headache, dizziness, slight
                           increase seizures. Given @ hospital.

4. Seroquel:           Little effect on SIB outside sedation @
                           300 mg PRN. Slight seizure elevation

5. Zyprexa:            5mg zydis disintegrating tablet, slight
                           reduction SIB, tongue edema (swelled),
                           slight increase seizures.

What to do when bad reaction to anti-psychotic happens:

1.    Stop giving/taking them!

2.    Report side effects to health care provider

3.    If you’re having trouble breathing, MMM…if I were on anti-psychotics and having allergic reaction—yes, I would take a big swig of liquid Benadryl, but don’t do what I just randomly thought, just be safe and call 911

Anti-dotes given to reverse adverse reactions to anti-psychotics:

1.   Cogentin  Intra-muscular (IM)
2.   Benadryl  PO (by mouth) or (IM)     

Thoughts on why these drugs didn’t work so well:

Haldol: Has high affinity for D2 in temporal and prefrontal areas, blocks dopamine in nigrostriatal pathways, which raises risk of extra pyramidal symptoms (EPS), slight affinity for D1 and D4, minimal affinity for serotonin and alpha-adrenergic receptors

Risperdal: High affinity for D2, slight affinity for D1 receptors. Targets various serotonin, histamine, alpha-adrenergic receptors

Geodon: High affinity for D2, D3 receptors, targets various serotonin, histamine, alpha-adrenergic receptors; doesn’t touch D1

Seroquel: Low affinity for D1, slightly higher for D2; high affinity for 5 HT2a and histamine receptors. Little, if any affinity for D4. Interestingly, a norepinephrine reuptake inhibitor, which should pump brain up, but is probably countered by the potent (H1)histamine effect

Zyprexa: High affinity for D1, D2, 5 HT 2a & c.

WARNING: Atypical Anti-psychotics: GEODON and SEROQUEL have high prolonged QTc interval risk. (Geodon wins 1st place, Seroquel 2nd). What does QTc risk mean? A high QTc score means high risk of elevating your heart rate, as in tachycardia. Rapid heart rate. Risperdal and Zyprexa come in 3rd & 4th place, in that order.

The utmost goal of physicians should be to rapidly achieve and manage neurotransmitter homeostasis in brain to promote and restore health to autistic persons suffering from chronic SIB. This may be, in my opinion, the most promising first-line-treatment in controlling devastating chronic SIB in autistic persons. The utmost goal of parents is to work with physicians to achieve this goal, which will most likely include using adjunct treatments, such as special diets, vitamins, herbs, massage, exercise or whatever research supports as reasonable adjunct to target goal of achieving neurotransmitter homeostasis in brain.

What is showing promise for our son as of this month:

1.    Topamax 100 mg Given 7a (50mg) & 7p(50mg)
2.    Keppra 3000 mg  Given 7a (750mg) 1pm (750mg) 7p (1500mg)
3.    Clonazepam (1 mg) 1p (0.5mg) 7p (0.5mg)
4.    Lamictal 300 mg  Given 7a (150 mg), 1p (150mg)
5.    Seroquel  50 mg   Given 1p
6.    Guanfacine 4mg   Given 7a (2mg)  1p (2mg)
7.    Mirtazapine 15mg  Given H.S. (night) 8p

Adjuncts: B-Vitamin/Iron complex
               Calcium/Vit D3 complex
               Multi-vitamin children’s chewable
               Himalaya Bacopa monnieri (herb)
               MRM Liver X with Bio-Sorb

Okay, so that’s what he’s on NOW, and I know it’s way too many meds, but our GOAL is to keep REDUCING meds, because goal is always LOWEST and LEAST drugs possible. This takes time. And careful thought. For example, NOW that we’ve reached final titration of the newest seizure med, Topamax, we will begin to scale DOWN on Keppra, seek to have clonazepam only as PRN (as needed for breakthrough seizure activity or agitation), and eventually, fade out Seroquel.

As for other new drug—Guanfacine--this drug has been a real surprise. I learned about this drug during one of my marathon research adventures. I then asked psychiatrist if we could try it, since I believe my son’s SIB could be fueled by episodic states of hyper-arousal: No doubt, hyperarousal being a ‘chaotic and frightening flood of affect that threatens and overwhelms brain’ could fuel SIB. Guanfacine is an alpha-2a receptor agonist, used to treat high blood pressure, thus decreasing body’s release of adrenaline and stress hormones. After all the anti-psychotic side effects, Guanfacine seemed like bite of a brown sugar and buttercream chocolate.

The great thing about Jamey, my son, by the way, is that no matter how horrible things get, he is an amazing autistic person. He blows everyone away with his ability to bounce back, as if the hammering he does to himself, and the panic and pain of it all, is somehow, for such a time as this, a useful tool in the hands of God.

For the things which are seen are temporal, but the things which are not seen are eternal.” 2 Corinthians

April 14, 2011

Disability Rights of California Helps Autistics

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The first week I pulled Jamey from the group home I was so furious I wrote so many letters to so many agencies, God only knows who I drove into retirement.

One of the most vital state agencies—one that should never suffer budget cuts—is Disability Rights of California. Attorneys that choose to work advocating for the rights of developmentally disabled are men and women of rare qualities. A circle of persons to whom much adoration and praise is well overdue.

The attorney that took our case was a young, spirited, woman with a sardonic sense of humor. Looking back, I realize that I faxed her more evidence than a human could possibly read, but she was able to sort it out, choose the most stirring evidence, and present it to the judge. I of course, used video as my main evidence to show Jamey was indeed nothing like words on paper could ever describe.

It would take several months before we finally got to go before a JUDGE and argue our case for state providing adequate nursing care. Two meetings with two different judges later, we FINALLY got support needed, mainly because we were repeatedly told, "there's no placement available to meet you son's complex needs-and there never will be) though what we won in court didn't address the acute, sudden 2:1 he often requires, it helped keep Jamey out of dangerous out of home placements that can’t meet his incredibly complex needs (we have a GAG order, so we can't reveal all the details of our court case).

April 12, 2011

Endless Advocacy and Autism Part 13

The Group Home tried hard to meet my son's needs, but his needs grew too complex and demanding. Frustrated, they resulted to giving him Nyquil everynight. Problem with repeatedly giving Nyquil to autistic persons with epilepsy, is that Nyquil, at some point, LOWERs seizure threshold. Jamey developed his first Tonic Clonic seizure (2008) inside group home placement. He was also losing weight. And, with the removal of skin shock therapy, more self-abusive than ever.

One afternoon, I received a call from the school that Jamey was sent to class with severe lacerations and contusions to ear.  According to school nurse, group home staff had sent Jamey to school, covering up wounds with ear muffs and soft shell helmet. (Upon investigation, I would later learn, Jamey was left behind door all night to beat himself, staff sleeping). When I asked why group home wasn't bringing Jamey immediately to doctor: "We can't get a hold of anyone there." said the teacher. Great. So I drove 2 hours to Long Beach, picked up Jamey from school and brought him to Kaiser. While there, I had forgotten my handicapped sticker and got a ticket. Thank you Universe. (I later fought the ticket and won). So, anyway, I get him to doctor. Jamey's ear is swollen and red, he's miserable. Hitting ears. Hitting face. Crying. I'm hugging him. Rubbing his hands. Giving people dirty looks who are staring blankly at us. I hate blank. Surprised, sad or shocked is okay, but blank pisses me off. Doctor confirms emergency surgery  needed to repair ear. Jamey's admitted to hospital. Hours later he's finally brought into surgery. Afterwards, as he attempts to punch his newly repaired ear, they try and rush him OUT of hospital. I say I'm not comfortable bringing him back to group home, and need time to organize him coming home. A doctor fights me. Doesn't give a damn about our situation. Another doctor steps in. Gives a damn. Helps us. I prepare to bring Jamey home.................He's NOT returning to group home. I'm not sure I'm ready for this, but I have no choice. I can't leave him there. He's not safe.
Months prior to Jamey left behind door to beat self, I had again demanded one to one staffing to protect Jamey: I wrote to DIRECTOR of Harbor Regional Center. Here's the actual letter:

Letter to Ms. Patricia Del Monico (a real winner)

Harbor Regional Center 21231 Hawthorne Boulevard Torrance, CA 90503 (310) 540-1711,

November 12, 2007

Re: James G.

As you know, Best Care provides one to one support for my son by pulling from the regular staff. That is not, nor ever has been, a “stable” support. (“Stable” defined in the Coffelt vs. DDS settlement agreement).

As you recall, on 8/28/06, I warned you “logic dictates that an unofficial, unfounded 1:1 aide is an unstable support.” You failed to heed this warning.

I also requested that a one to one aide be temporarily funded and thus assigned to my son. This was also, as it has always been by both Harbor and San Diego Regional Center, denied, despite Jamey suffering injuries due to lack of adequate protective supervision in the group home. No documentation of injuries sustained could be found by staff.

Best Care staff admits that one to one “would really help meet Jamey’s objectives of decreasing the self-injurious behaviors…and that sometimes it even takes two of us to help Jamey.”  Given his often 2:1 staffing requirement, a 24 hour one to one aide is critical to support decreasing Jamey’s chonic self-punchig behaviors, and to protect him in the event he has a seizure.

Interestingly, Coffelt Vs. DDS clearly shows disabled must “have access to quality, stable, individually tailored, and integrated community living arrangements of their choice.” Obviously, since my son can’t choose for himself, and I’m his mother/advocate/conservator, I chose Best Care for him and want him to remain there with the proper supports. A proper support would be 24-hour 1:1 aides assigned to Jamey only—not pulled from regular staff.

Ms. Del Monico, you are in a position of authority to help my son. You are not helping him. Instead, you have thwarted efforts to provide him with stable support. I find this kind of attitude counterproductive in meeting the delicate needs of severely autistic consumers like my son who are obviously in need of extra staffing supports to protec them.

Interestingly, Welfare and Institutions Code 4648 (a)10, says “in order to achieve the stated objectives of a consumer’s individual program plan, the regional center shall provide,

“Emergency and crisis intervention services including, but not limited to… behavior modification services (as in a one to one aide who can implement Jamey’s proactive behavioral interventions to decrease self-injurious episodes)…as needed, to maintain persons with developmental disabilities in the living arrangement of their own choice…
Crisis services shall first be provided without disrupting a person’s living arrangement.”

It has also been discovered, Ms. Del Monico, that Harbor Regional Center officials have, at various times, suggested the group home “give the parent [me] a 30 day notice” and transfer Jamey to another home if I keep 'pushing for the one to one aide'. Perhaps this is a tactic you use when you don’t want to provide a requested service? It's a dirty tactic.  This is similar to the dirty tactic used of not writing down a necessary service on an IPP, so you don’t have to provide it.
 Please cease and desist the dangerous recommendation of drugging my son with psychotropic drugs. I've repeatedly warned you, there is sketchy research confirming anti-psychotics are safe for severely autistic children/teens/adults who also have seizure issues. My son’s type of self-injurious behavior doesn’t respond to drug therapy. New research shows psychotropic drugs are increasingly overused in community living facilities to avoid providing necessary supports for clients with intensive needs. 

Drugs don’t provide pro-active interventions to avoid a self-injurious episode. Drugs don’t think. People implement pro-active interventions I have worked hard to create to protect my son over the years. Failure to implement pro-active interventions, renders my son at high risk for self-injurious and intense seizure episodes.

Again, without a one to one aide formally assigned to my son, he isn’t getting the STABLE one to one support necessary to help him thrive and “decrease his self-injurious behaviors.” Best Care staff has admitted they “DO NOT always provide one to one” for Jamey, though they really try. As a direct result, my son has NEVER actually received a one to one assigned aide in the home and has thus suffered numerous lacerations, contusions and bloodied his nose and mouth and split his lip on several occasions for the past several years he’s resided in this home. Amazingly, Harbor Regional Center has willfully ignored this! Yes, your agency has NEVER documented his sudden, episodic savage self-injurious episodes! Ironically, upon careful analysis, the majority of my son’s self-injurious episodes have been sparked by the failure to provide a 1:1 implementing the pro-active interventions in place to prevent these episodes and meet his objective to “decrease his self-injurious behavior”!!!  Even times when my son has been sick, and there is a sudden, unexpected SIB episode, a 1:1 who knows him well, will be able to intervene and decrease self-injurious episodes by carefully implementing needed pro-active interventions, such as taking a warm shower, taking a walk, massaging his arms, etc…anything to keep him calm, comfortable and safe. This requires a quick human mental and physical response time. Only a 1:1 specially trained and assigned to my son could possibly meet this requirement.

Now, it appears to me, that Harbor Regional Center officials are skilled at ignoring reality and don’t write what’s really happening down, as if it’s not happening. Sadly, the bruised and battered face of my son, along with his swollen and cut hands and knuckles, shows a different story than the one you like to tell in your phony, fraudulent Harbor Regional Center reports regarding the wonderful progress my son has made and is making, within his group home.

My son can be more successful—and safer—in this home with a one to one aide directly assigned to him-NOT pulled from regular staff, and who consistently implements the necessary pro-active interventions, such as making special foods, taking Jamey for walks, re-directing him, reading to him, taking him for car rides, etc…, effective immediately. This is NOT being done now, as there is NO direct aide assigned to Jamey 24 hours a day. This has, on many occasions, resulted in Jamey left behind closed doors, where the staff couldn’t hear him and he was smashing himself in the face and head for several minutes before someone heard him wailing and got to him. People have to act QUICKLY with my son, Ms. Del Monico, they can’t be coming from another room, possibly across the house, or from where they are dealing with another client…. ANY delay in action, even the slightest delay in implementing a pro-active or acute intervention, results in dangerous self-injurious episodes that pose a threat to my son’s health and safety. He can hit himself quickly, and throw upwards 91 punches to his face and ears, within 90 seconds! These episodes must be acutely handled and often CAN be prevented and must be prevented at all costs. One to one staffing directly assigned to my son is a critical support that can help my son decrease his self-injurious behaviors. I have heard you argue that one to one doesn’t work for Jamey, Ms. Del Monico, but that’s not true. When a one to one doesn’t or hasn’t worked, it’s NOT because one to one aide or staffing itself was the failure, it’s because the one to one person assigned to Jamey either wasn’t there with him to immediately stop the SIB by re-directing him, or wasn’t there in time, or failed to implement the necessary pro—active interventions that would’ve prevented the SIB. It's obvious that one to one assigned aides must be trained to KNOW Jamey. More bizzare, is your  OWN nursing assessment notes, Jamey needs 2:1 care! Yet, you deny him one to one care? I find this most illogical and a total disregard for his safety and wellness.  

Kim Oakley
Mother of James

More Information I had sent Harbor Regional Center: (just shows you it doesn't matter HOW MANY WARNINGS you give some people, they just don't give a shit--- because there is no consequence for not caring)
1.         Jamey’s  a Behaviorally FRAGILE autistic person. This means his behavior abruptly changes for varying complex internal and external reasons—all of which must be identified, treated, prevented and monitored. 
2. Best Care staff admits that one to one “would really help meet Jamey’s objectives of decreasing the self-injurious behaviors…sometimes it even takes two of us to help Jamey.” At the very least, a 24 hour one to one aide is critical to support Jamey’s seizure/SIB activity and protecting him in the event he has a seizure.
                                                       Notes to self.....

  1. During Jamey’s last year at the group home, he began suffering from severe weight loss and malnutrition, due to lack of daily medically monitored care or knowledge of how to properly treat Jamey.
  2.  Monitoring complex mix of interrelated medical and behavioral issues, catching undetected health problems is critical to protecting Jamey’s health. For example, when Jamey had an undetected UTI, his self-injurious behavior (head punching) skyrocketed. Not until UTI was eradicated did his self-punching stop. Likewise, when Jamey had contracted H-pylori inside group home, this went undetected and turned out to be etiology of acute, sudden savage month long bout of self-injurious punching. Not until the H-pylori eradicated did self-punching subside.
  3. . Group home nurse never once properly analyzed Jamey’s health. All she did was suggest we put Jamey on anti-pyschotics, which, I’m guessing, was her way of transferring  fact she secretly needed them. That, along with some Cogentin, as she was the dumbest nurse I’ve ever met.

  1. Jamey’s neurologist (really nice, helpful female doctor) states, 12 hours of daily LVN would help Jamey, “remain in his home with his family.” And home is the best place for Jamey.
                        Arguments to justify LVN care at home, with me medically managing program:
  1. I have a Master’s Degree in Education and a single subject credential in health. I have extensive knowledge of my son’s health needs. With the help and support of 12 hours of LVN care daily, I will have the time and energy to be of maximum assistance to my son. I can devote more hours to research. I am the 2:1 back up support, saving state thousands of dollars a month in staffing costs in out of home care facility. 
Other reasons why LVN nursing care support for our family is vital:

    1. We have ZERO family support. No grandparents. No cousins. No aunts, uncles or siblings who help us.
    2. Failed out of home placement inside an ICF-DDH: Jamey was in an ICF-DDH for 4 years and though, for the first year, staff seemed to handle him, after a year, they fell apart. And it went south from there, the end result Jamey being warehoused inside the group home and becoming malnourished, severely underweight, dehydrated and suffering from more seizures and--the last straw---hemotoma suffered when caregiver (60 yr. old 100 lb legal? immigrant who spoke broken English and couldn't tell me what was going on with Jamey) failed to protect him. That’s the kind of placement and care that my son was getting from a facility that was paid $5200.00 bucks a month by California Dept. of Health, while Jamey attended school 5 days a week from 9-3pm,  so if that's what they got for substandard care, I want at least 12 hours of LVN care for my home, where my son now is, after this failed icf-ddh placement, where the QMRP (head of group home) herself, stated the home couldn’t’ handle Jamey because he now requires “2 to 1” care.  Do you know the cost of 2:1 nursing staffing care for an autistic adult outside the natural home? It's upwards one million bucks a year, so be happy I'm willing to have our adult autistic son at home. 

So there you go. Now let's talk about IHSS. Yes, the program that saves California money by allowing autistic adults to stay home and not be place outside their natural home. There seems to be ambiguity with IHSS as stipend vs. income. It depends WHY you get it. IHSS ARGUMENT to justify STIPEND in rare cases like my autistic son's case meets criteria for stipend, but don't get excited, this is rare.  For one,
1. State informed us on severeal occasions  "there is no appropriate place for you son in the system, due to his unique and complex needs of having both seizures and self-injurious behaviors." That left us with no choice. We were forced to take on extraordinary medical and behavioral management of his needs. One judge even deemed Jamey "uncharted territory." In essence, the state hasn't seen such a case like this.

2. In cases like Jamey's, where IHSS and respite care funding are "special circumstances where state has offered NO adequate out of home placement, and disabled person is at risk for INSTITUTIONAL care, IHSS money shall be used as a stipend to offset extraordinary costs of out of care, meet the persons needs within  home and provide protective services ...In Home Support Service stipend in extraordinary cases where there is parent/adult child relationship and consumer is deemed "institutionally at risk" is of special to ensure health and safety of consumer is met with proper supports from given stipend.
 3. California Penal Code 368 C, requires state officials, in case of knowing autistic ADULT person is in grave danger of harm OUTSIDE home, to make every effort to provide unique and creative home supports, including but not limited to, special  waivers, stipends, etc,

4. To meet definition of stipend waiver, it must be seen as a form of salary, but distinct from wage, or salary, because it does NOT represent payment for work performed, instead represents payment that enables somebody to be exempt party or wholly from waged or salaried employment in order to undertake role that is normally unpaid (ie..parents of disabled children).

5. Stipend payments are authorized for services or tangible items directly related to meeting basic needs related to persons with developmental disabilities that cannot be met outside home, due to risk factor involved in out of home care placements failing to meet critical care needs. Needs state agencies are not equipped to manage, and as such, pose an immediate danger to the health and safety of disabled person.

Stipends are an often underused, overlooked remedy for government failures to meet critical care needs of families facing autism. Now, let's think about this, if a research fellow can get a stipend for studying things like, "L localization of endothelin-1-specific receptors in rat testicles" ---so don't tell me for a minute that  parents of autistic children don't qualify to receive STIPENDs for researching, studying and discovering ways to better help their autistic children.

April 9, 2011

Mindless Years of Chaos Siege and Oppression Part 12

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It’s Jamey’s 17th birthday and he’s been home for the weekend (from the group home). I sit in the quiet of the morning, beside his bed in the pale blue room that faces mountains. I look at his hands, scarred by biting his flesh all these years, and nudge him awake.  “Time to eat,” I say. He yawns, then slides his legs out of bed and stands beside me, much taller now. Face to face we make eye contact. He looks into my eyes, taps my shoulder and shuffles forward—the smell of French toast and eggs luring him into the kitchen. I grab his arm. “I need to change your diaper,” I say. He begins slapping his legs and his hands move to his head. The head God has miraculously preserved all these years. And with the sanity God has preserved all these years, I pin his arms and remove a soaked diaper. He tugs his left hand from my grip. A small voice inside me says not to panic. I say a quick prayer. The same prayer I’ve prayed for a decade. “Please heal him Lord.” I open the drawer where I keep the remains of the broken SIBIS. The remains of hope and healing that did and didn’t happen. Outside, I hear my blue merle Cattle Dog barking. Probably chasing crickets, rattlesnakes and squirrels. I wonder if the same guy who invented shock collars for barking dogs, will invent a shock-watch for children who can’t stop beating themselves. I wonder if the advocates will go crazy. The same advocates who don’t know Jamey. I close the drawer. Now I wonder why I’m thinking about skin shock again when I know if a thousand things go perfectly, Jamey won’t hit himself. Jamey stops and jerks gently—a mild seizure, then starts giggling and doing a mini dance. It will be several minutes before he thinks about hitting himself again.

The night is now humid and I’m lying on Jamey’s bed, plastered like wet foam against the wall rubbing Peppermint Oil on his feet.  He’s sprawled, face up, feet in my hands, staring at pictures from David Kirk’s book, Miss Spider’s Wedding that I taped to the ceiling. We fall asleep, but I later awake when I feel him tug my hair, pat my head and do his goofy giggle. In the morning, Jamey is out in the kitchen, crossed-legged on the sofa (right foot on left hip, left leg on right hip—a yoga nightmare) waiting for breakfast. When he sees me, he unravels and ambles towards me, stopping momentarily to stare at the spinning ceiling fan. Music a buffer of any groans or loud humming, I walk over to the CD player and slip in: Pachelbel, “Canon in D Major” and Handel’s “Concerto grosso, Op.6, No. 6”.  As typical, Jamey starts his humming. Then it gets louder and louder. I’m holding my breath now. Once I find it, I fall into a controlled rage, hurriedly flipping wheat germ pancakes and eggs, lest they burn, like so many meals before. “Hang on,” I say.

I am relieved when the group home picks Jamey up. As usual, he does not cry when he leaves me. Though, when I kiss him goodbye he presses his mouth against my cheek and squeals. As the car with the group home staff and Jamey disappears down the street, a lump forms in my throat and I wander the house, picking lint from the carpet. Pushing the door open to his room, I walk over to his bed and begin to strip the sheets, preparing for his next visit, wondering what to do with myself.
The phone rings. Jamey’s super energetic and extra caring 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 male special education one to one aide. The aide, a superman in my eyes, is an Ecuadorian man working towards s 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. I return to the pediatrician. I say we know Jamey’s in some kind of pain. He asks if we’ve seen a dentist. I explain unless Jamey’s asleep, diagnostic dental X-rays are impossible. I don’t think the doctor understands. I explain I’m working on a dental/Kaiser deal. But it’s torture to explain and Jamey’s wandering the room and humming.  Again, I suggest Jamey medical X-rays, like dental X-rays, are required to diagnose medical pain, if indeed, there is pain. Again, I suggest Jamey’s non- verbal status is reason to delve deeper. The pediatrician says a head and neck MRI is costly and there’s no guarantee internal pain is causing the escalation of self-abuse. Then I remember general anesthesia is required to take X-rays because no way will Jamey sit still. He sends a referral to orthopedics. Orthopedics can’t see Jamey for three weeks.
Our Dental plan didn’t cover general anesthesia for disabled children. For days, I mope around wondering why Jamey can’t have his teeth cleaned and examined under anesthesia. 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.  Of course, I’m often told I’m ‘first person to ask’; ‘the only person to complain’ and ‘the only unsatisfied customer.’
The Delta rep blames Marks’ work. “They should’ve negotiated it into their employee contract,” she says. I don’t know what the f--- she’s blabbing about. I phone Mark. I get a number. 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, Dr. Stephen Lee, signed on with Kaiser.
The preparations for Jamey’s dental work were more elaborate than I expected. Before the dental cleaning under general 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. Hence, the group home will drive Jamey two hours to our home, where we’ll then transport Jamey twenty minutes further south for a ten-minute dental exam. A week or so later, I drive to the group home, where I load Jamey into my car, and we drive to Kaiser for a pre-op exam. 
Inside the 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 finds her way to another topic. “How much does you son weigh?” she asks. I didn’t know. It took three nurses and myself 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 performs a rectal exam, which ignites a sudden rush of panic, my shoulders tightening, as I anticipate head hitting. But there is no hitting. Instead, Jamey giggles. “He seems healthy,” announces the pediatrician. “I’ll fax the paperwork to San Diego.”
On the morning of surgery, a woman from Kaiser San Diego 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 wrong,” 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. “Cursing is unacceptable,” she stammers and hangs up. I push redial. “Let me speak to this anesthesiologist,” I demand. “I’m sorry, but you are harassing me,” states Andrea. “What are you a mental case?” I ask. “I’m trying to find out about surgery for my son and you’re playing games.” Click. I pace the kitchen, cursing aloud. Then I redial. She answers without speaking. “Look, is my son’s surgery on or not?” I ask quickly. “I’m ready to blow up here.” “I do not respond to threats,” says Andrea and, again, hangs up. By now, I realize Andrea has attended too many violence in the workplace seminars.

Twenty minutes later, the super friendly and efficient dental assistant, Charity, rang my cell phone. “X-rays reveal an abscessed tooth,” she said. “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” didn’t 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.

Ever since Jamey entered the group home, one to one aides are pulled from regular staff.  This is not a stable support. Nor does it help decrease self-injurious episodes.
Jamey’s latest service coordinator is a soft-spoken American-Filipina, working her way up the Regional ladder. She’s polite and professional, but neglects to write Jamey needs a one to one aide on his IPP. I wonder if someone inside Regional has coached her. “Don’t write James needs one to one,” I imagine a Program Manager saying. “If it’s not recorded on the IPP, we don’t have to provide it.” On the IPP, I notice the counselor wrote: “Antecedents to Jamey’s self-abuse are unknown.”  I send an email. “Have you read the past sixteen years of Jamey’s Regional Center and school behavioral reports?” A “desired outcome” on Jamey’s IPP states: “Jamey will decrease his self-injurious behavior and have fewer episodes.” Surely, a one to one aide would help meet this desired outcome. For days, I check my email. No reply. I leave messages. A month passes. Again, I make the request. The counselor says she’s overwhelmed and hasn’t spoken to her supervisor. I phone the supervisor. Each time I call the supervisor is either on a break, at lunch, in a meeting, at a seminar or out of the office. Finally, a registered letter arrives saying assessments by behavioral specialist and nurse are scheduled, as if this eases my mind.
So now I’m standing in a compact county office thumbing through conservator papers, and an employee informs me it will cost $ 300.00 bucks for some court appointed pundit to investigate whether I’m fit for duty. Are you joking? I ask. I’m his mother. The employee explains the conservator process: Parent (aka conservator) files petition. Attorney represents your son (aka conservator). Court investigator interviews your son. Regional Center submits medical, social, psychological report about your son, and oh, yea, parents may submit evidence. Then a judge denies or grants limited or general conservatorship. Attorney? Court Investigator? Judge? Limited? General? Regional Center? Did she say Regional Center? Clutching the papers, I’m appalled, defensive. I run my tongue across my teeth and close my eyes. Panic. What if some legal eagle, decides I share guardianship with Regional? Umbrage. I’ll sue! My eyes snap open. I leave the building and face the inevitable. Outside, clouds scud over the sun and traffic thickens. I open the car door, slide behind the wheel and crank the engine. The impending doom of dealing with more bureaucrats sends a wave of nausea and my heart is racing. I pray God will get me through another ordeal I don’t want to face. After I finish praying, I am still anxious, but feel calmer, stronger, freer now—the product of mindless years of chaos, siege and oppression.    

Tear My Heart Out: Placing Autistic Children: Part 11

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Because Jamey didn’t have access to skin shock across settings, the integrity of the skin shock therapy was constantly compromised. After I discovered community care licensing codes allowing the therapy inside the after school program, I wrote a letter to the director of San Diego Regional Center.

September 11, 2000

“Dear Dr. Petersen,
For three years, my son’s After School Program has documented Jamey needs 1:1 care to assist him in the community. For three years, Cook, Holt, Nash and Reed have not responded to this need, though they’ve received reports documenting the need. One wonders if anyone reads the reports. I have also submitted several requests, but requests have been ignored. What’s going on? According to Manual of Policies and Procedures of the Community Care Licensing Division, Title 22, Division 12, Chapter 1, Article 3, Jamey can receive both 1:1 staffing support AND be allowed to use his skin shock therapy. When I showed Holt and Nash Title 22, they said they “didn’t understand” “didn’t know how to go about this” and “would see if they could work on it.” I’ve never heard a word since. Is this your tactic? To retreat and stall? While your employees run around trying to figure things out, my son is denied an inclusion in the community. And while they ignore information already reported, and hire more people to gather more information that then sits in their offices…my son still needs a one to one aide. Does it make sense that your agency opposes Jamey’s skin shock and fails to support the one to one aide needed that replaces skin shock?  This reminds me of your agency turning on our choice to use skin shock therapy, despite your complete failure to offer effective alternatives to stop him from hitting himself. My son can’t speak for himself, so I will not stop asking until he gets what he needs. And I won’t tolerate any retaliatory measures against his placement at the recreation program. Please include this letter in my son’s file and help him get the needed support.”
Dr. Peterson’s reply to me dripped with saucy excuses and ended up in the files of shame.
When Mark mowed the lawn Jamey would hover nearby wearing earphones and a huge smile, enthralled by the muffled rumbling sounds. Meanwhile, over the next few years, Mike and Matt grew more tolerant of Jamey, but even in peaceful times, Jamey’s presence was manifest at every turn. We never had enough respite care or support. Eyes peeled. Ears alert. Ready to jump up and, if needed, deliver drink, food or, if hitting—the skin shock. Nervous wrecks, all of us, no matter what we did to distract ourselves. And still, there was Jamey, delicate, needy, the guilt and shame for even being tired too much for anyone to admit. By February, the household was like an eggshell that could bare no more. Soon, the shell shattered and Mark and I separated for the third time in five years.  This isn't uncommon for families dealing with disabled children. The pressure and lack of supports, often too much of a burden to bear alone.


For years God had prompted me to place Jamey. And though I knew placing him could bring relief, I fought my own convictions. “Next year, next year,” I’d tell myself, as I’d run another mile. Take more vitamins. Pray. Forget about it. But chaos would break out, like it had a million times before, and I’d reconsider. Again, I began wondering about skin shock. What would happen if skin shock weren’t allowed in the group home? Would his self-injury return to previous frequency and intensity? Could a group home handle him? What about schools? Oh, that’s right, he’d need a different waiver at another school site. Oh, God, another battle. More meetings. More professionals. More bureaucracy. I can’t take it, I thought. Nor could I take what I was dealing with much longer. I had fought. And fought hard. What more could I do for my son? I was exhausted. We were all exhausted.

Parents seldom elect to place their child outside the home. Rather, they do, because they have little choice. They may be heading for divorce. Financially ruined. Mentally burned out. Many times, cries for help were largely unheard.                                              

To complicate matters, a group home can give parents a 30-day notice of termination if they have second thoughts about taking the child. This means: after heart wrenching decisions to place a child, a parent would have to take the child back. No explanations. Just a termination notice: “No longer fits our criteria,” is all the group home has to say.  And the criteria, by the way, can be manipulated. For instance, a group home may decide your kid is too difficult and, well, when an easier kid pops into the system, guess what? If another placement isn’t available, your kid is coming home. Can you imagine if you’re an older parent? Here you are at fifty, you finally said, okay, I surrender, I can’t take it anymore, here’s my child. You trust the system to care for him. Twenty years passes. Then one day, you open the mail and now your kid is coming home. As if this isn’t enough, the Department of Developmental Services has the audacity to bill parents for group home placements. Don’t forget the state pays upwards $5,000 a month to group home operators. This is support you, the parent are never offered to maintain your severely disabled child at home.
Aside from the normal worries of placing your child in a strange environment, news reports had exposed abuses ranging from physical and sexual to torture and neglect of disabled residing in residential homes. I approached the placement with trepidation. Jamey’s regional center worker phoned. “I’m searching the system for group homes in San Diego,” she said. As I watched my family slipping away and had no other choice, I moved forward with the placement. I hated myself and life for it, often, for reasons I couldn't control, slashing my arms with glass or scissors. The first home I visited was rickety, one story affair funded by Regional Center and licensed by the Department of Social Services. The owner was an expressionless woman, who owned several homes and had been cited numerous times, but was still in business. As I passed a brown lawn that was on its way to being a bog, I climbed broken steps and entered a peeling doorway, which led to a living room where two caregivers watched Jerry Springer.

Three autistic kids wandered into a kitchen and huddled near a pot of boiling water. Above the stove, cabinets were filled with food from the 99 cents store. As if this wasn’t enough to leave, when I saw the bathroom, I almost tripped over damp towels piled next to a moldy tub, which, I kid you not, had a tarp serving as a shower curtain. The bedrooms were narrow and gloomy, draped with dark blue sheets and smelled of saliva and piss. Under the beds were ant and cockroach traps.

The power of God: During our extended separation, Mark marched furiously into self-destruction while Melanie lost herself and ended up in a residential rehab. It seemed life was getting any easier. Turning back to God, I started praying and reading the bible again. As time crawled life became a bitter blur of fractured lives and lost years, I grew more determined to salvage the remains. Then, as if I had finally learned to do what faith filled desperate women on the brink of losing everything did: I fasted and prayed. For a long time, nothing happened. And I grew weaker. Around the week my faith split like the Ten Commandments, Mark phoned and inquired about God. “What do you want to know?” I asked, as if I didn’t really care, because I was dangerously close to not caring. Three hours of conservation about forgiveness, restoration and Jesus later, Mark committed his life to God and suggested we reconcile. Weeks later, we began counseling with a gentle, but firm Pastor from Calvary Church, who challenged us to forgive, forget and press on.
The second home was an ICF operated by an older woman named Miriam. A short, blonde of medium build, she spoke like Marilyn Monroe and resembled a young Eva Marie Saint. “Let me give you a tour,” she said. Her decorating tastes were eclectic: Beveled mirrors framed in Ornate Gold, wallpaper in jungle themes, silk window panels, white laminated cubed organizers and wool comforters stitched in squares. There wasn’t much in the backyard. Just a birdbath, two cross arm benches on concrete blocks and a quick shade canopy. From the kitchen, I could smell the aroma of fried chicken and rice.
We sat in the living room to discuss Jamey’s needs.   “From the time he gets up, it’s on,” I said. “You have to move quickly. Beat him to punch. Have breakfast and clothes—everything— ready.” Miriam seemed to disappear in her thoughts. I then feared Miriam didn’t dare say what she wanted to say. No! I can’t handle this child. “Psychotropic drugs have worked beautifully for some of my clients,” she said slowly. Why argue? The woman had been through hell. She had started the home after some lowlife in another group home had raped her disabled daughter. I politely dismissed the placement and waited for a better choice. To this day, the woman still runs a safe, loving group home, and has helped many families raising persons with severe autism and other challenges.

Dreams and wishes settled into the end of summer. The kids returned to school. Halloween came. We dressed Jamey up in Mark’s firemen gear and pushed him through the neighborhood in the stroller. Mike and Matt ran from door to door, scooping extra candy “for their brother” knowing full well Jamey didn’t eat candy. Clever little humans!
I was told there was NO WAY Jamey could use SIBIS in a group home. "But we promise you Kim, there will be ample supports in place," said the Regional Center Case Manager. Like a MORON, I believed them.  The next group home I was told to visit was located  two hours from us, in a middle class neighborhood, not far from Knott’s Berry Farm. It was classy I thought, looking around. Not upscale, not rich, but definitely classy. Rows of one-story track homes, all in rich colors, styles and geometric shapes lined the streets. Cherry and dogwood in blossom filled the air. I led Jamey up a paved brick entrance and entered the home. Inside, five spotless bedrooms, all painted Navajo White with yellow trim, were sprinkled with Disney posters and photographs.  Five kids lived in the home: Shane, Ray, Violet, Stan and Fiona, all from various ethnicitys and representing a rainbow of disabilities, including autism, cerebral palsy, Down syndrome and mental retardation. Jamey wandered into a bedroom, perched on a twin bed and peered out the window. Outside in the yard, two cockatiels fluttered in a wrought iron cage. I noticed each bedroom had a deep closet displaying crisp shirts and bright shoes meticulously grouped as if a Neiman Marcus presentation. Inside the kitchen, a woman toiled quietly near the sink, preparing Lumpia (a popular Filipino egg roll) on a cutting board. Beside her sat a giant bowl filled with apples, bananas and mangos and other fruit I didn’t recognize. In a second living room, which was part of an old granny flat, were bamboo trees in painted vases, a fish tank and giant portrait of the Madonna. There was a peaceful, orderly purpose in this house. I was asked if Jamey could spend the weekend. Kayla and I both agreed it was a good way to see if they could handle Jamey.
I gave the group home an incredible amount of instructions, which included: “Make sure he wears his Rep-Cord chew necklace to prevent biting and headphones to buffer loud noises,” I explained. 

“If he hits his head, hold his arms and ask yourself if he’s hungry, tired or thirsty. If he is: Wait a few seconds and get him what he wants. Sometimes he may have already eaten or drank. In this case, he needs more or he’s bored. If he’s bored, take him on a walk around the house or outside. Get his mind off eating and drinking. If that fails, give him a bath. If that fails, he may be sick, or his diaper is too tight or he’s too hot or too cold.” I stopped there, fearing I’d overwhelm the staff. The first weekend at the group home, the staff confessed they had to tie Jamey’s arms to a chair to stop him from beating his head. Apart from restraining him, it took two or three staff to surround him. It did not look good. And when I went BACK TO REGIONAL CENTER and asked why a one to one aide wasn't funded for Jamey, I was told it was denied! But they promised, I said. Yeah, right. Welcome to system serving disabled.

The second weekend, Jamey bit his hands and cried for hours, but the staff assured me they could handle it. Marissa, the group home manager said: “We need time to get to know him.” I believe they were the first outsiders who wanted to know him. And I think it was their sincerity—their ability to admit they had a hard time, but vowed to help Jamey—that gave me hope. At some point I asked the tough question: “Do you screen staff for potential sexual predators or physical abusers?”  Marissa’s serene expression dropped and a scowl spread across her face. “These kids are like our own babies,” she said in a low, serious tone.  Walking across the kitchen, as if in deep thought, she turned, raised her hands into a chokehold and said: “I would murder someone.” What more could a mother ask?
The day I packed Jamey’s clothes, diapers, family pictures and medicine and he drove off with the nice Filipinos, I felt like a bomb exploded in my stomach. A long rope of anger, fear, sorrow, suspicion, relief and hope entangled me. Kayla, Jamey’s regional worker, stood in our driveway and helped me wave goodbye.  “Jamey couldn’t ask for a better advocate,” whispered Kayla, as she hugged me. “You’ve done all you can do.” Though, privately, I knew there was so much more to come. Mark stood in the driveway, watching the car ascend the hill and weave down the road.  Wiping his eyes, he said: “God this hurts.” Behind us, Mike and Matt threw a tennis ball with the dogs. For several months I would awake in the middle of the night and hear Jamey hitting himself. Or dream he was drowning and I had to swim to the bottom of a murky lake, to save him.
It was standard routine at the NEW LONG BEACH school Jamey was now enrolled. To the constant disgruntlement of the teacher and classroom staff, Jamey hit himself. And without the skin shock, he would only get worse. And that’s when I got angry again and wondered why we ever had to consider skin shock (because honestly I hated skin shock!) and why special education programs for severely disabled students aren’t modeled after spas and retreats. Geared to providing comfort. Blue-hues, soft lights and music, soothing scents and waterfalls are better than hard, cold classrooms that post lifeless behavioral plans that seldom work.  Anyway, Jamey’s school was no retreat. It was a public middle school. Bells, whistles, slamming lockers, concrete walls and body odor.
And so the letters began. This time to another school district, with new teachers, in another town and my son two hours away. I’m too demanding, some said. With Jamey in out of home care, I should let things go. Move on. Start over. Relax. Such advice. Miles of asphalt and rows of stucco don’t separate a mother from her child. Sometimes, I wondered if people noticed the sorrow stamped on my face, hidden behind fierce boldness, sarcasm and jokes. Other times, I didn’t give a damn when anyone thought.
After analyzing copies of Jamey’s school records, I discovered the new school wasn’t taking data on Jamey’s behavior. This triggered intense rage, as if I experienced some flashback that I could not control. Furious, I wrote a letter to Jamey’s new school district: “No data on Jamey’s self-injurious behavior or his seizure activity was taken between April 14th—May 21st. When I asked the educational team why—they “didn’t know who was responsible” for this situation and “didn’t know what happened. I also requested the school send me data [1x a month] on Jamey’s seizure and self-injurious behavior—so I can monitor his progress. (As of 10/10/03—As of 10/03: This was never done). I also requested a school nurse, OT and psychologist certified in behavioral analysis evaluations, evaluate James. As of 10/10/ 03, this has not been provided."
In October, I attended a school meeting. I could barely tolerate looking at everyone’s faces.  A school psychologist, school nurse, administrative team leader, teacher and someone ‘acting in place of speech and language specialist’ were present. None of the quality assessors knew where current assessments or information on Jamey was. This did not help quell my flashbacks and subsequent fury. While I skimmed the IEP, I noted half the document was filled out. And as the educators rushed through IEP, I began hyperventilating. The room grew dim. I asked if they had purchased the chew necklace, earmuffs and small trampoline I’d requested. The teacher stated no such purchases were made. When I asked who was responsible for purchases, nobody knew, as if they had selective amnesia. When I asked if the cafeteria made the food accommodations I requested for Jamey, Nobody knew that either. Was the adapted spoon provided for Jamey? Nobody knew who was supposed to buy it. I threw a stack of papers across the circular table. According to Feng Shui practitioners, circular tables are used to generate discussion and solutions. “Who the hell is in charge?” I blared. Despite fifty employees floating inside the latest special education department, nobody could give me a straight answer. Instead, there was silence. Apathy. Mumbling. Paper shuffling--all the sounds and setting that triggered me to think I was in a war zone. When my stomach relaxed I asked:  “If there’s no data—what data are you referring to in the functional behavioral assessment report?” Turned out the school psychologist lifted the data from an old report.
Had the school purchased the golf clicker I had suggested to record data on Jamey’s SIB and seizures? No they hadn’t. Finally, out of the rubble, a voice emerged. A gentle voice of a woman who took charge and offered to handle the problems I had clearly articulated.
This woman, who was a special education administrator, promised Jamey would receive the chew necklace, trampoline and foods and other necessities I had requested. She kept her promise. If not for her courage and kindness, I may have never trusted any professional again.  Just shows you how random act of kindness can alter or transform lives.