November 10, 2015

Ridiculous Things People Can Say to Families Living with Severe Autism

Award Winning Non-Fiction Blogs - BlogCatalog Blog Directory Ridiculous things said and asked about our autistic child in an                             ER or hospital setting:

“Doesn’t he always have behavioral challenges?” 
Response: No, he sometimes hits himself. When the self-abuse is mild to moderate, it’s behaviorally based. When he suddenly hits himself for hours, causing lacerations to his hands and biting pieces of skin off his fingers, presenting with facial grimacing, refusing to eat, screaming and crying, the severity of self-abuse tells us he’s in pain.  Until the unseen medical issue is diagnosed and promptly treated, the behavior will continue. When he’s properly and promptly medically diagnosed and treated, the behavior will return to baseline and he can safely ride in a car to his autism day program and come home.

“What do you normally do at home that makes him feel better?” 
Response: If what we 'normally did' at home to soothe him worked, we wouldn’t be here in the emergency room or had to call 911.

“Maybe he’s acting out in the ER room because he’s not at home. He’s in an unfamiliar place.” 
Response: He was acting out at home and in his autism day program, both familiar settings.

“Maybe he’s just having an autism flare.” 
Response: Is that like a gay flare? A diabetic flare? I’m not sure what you mean.

“Have you tried antipsychotics?” 
Response: Autism is not a mental illness. Nor is it a psychiatric disorder. 
But yes, in good faith, we’ve listened to doctors and gone through several antipsychotics. They caused extra-pyramidal side effects that increased self-injurious behavior and triggered seizure activity. We wish there was a magic drug, but as of now, nothing has worked. Medical cannabis is looking more favorable at this point. However, medical cannabis is tricky, too. And hard to find correct strain and dose. Good news is cannabis has never caused any side effects and when our son isn’t eating, a few teaspoons of Cannabutter leads to finishing three yogurts and getting his medications down. But even medical cannabis, like anti-psychotics, isn't a replacement for a proper medical diagnosis causing pain. 

“Don't you have medications at home to calm him down?” 
Response: Depends what is wrong. And not so easy during a sudden behavioral meltdown rooted in pain. For instance, in this current situation we tried, but he was biting himself, punching himself in the head and screaming for hours. During brief moments he was calmer, we did try to give him medications, but he wouldn’t swallow them, and began choking on them or spitting them out while sobbing, as if swallowing hurt, so we didn’t want to risk aspiration. And forget an IM injection of Ativan, since Ativan is for seizures, not behavioral meltdowns and even if we had an IM injection of anything during an extreme meltdown, it would take up to 4 people to keep him still. There was only two of us at home, and when we tried to give an IM injection in past during a SIB meltdown rooted in pain, he was twisting and turning with such strength, the needle broke off in his arm. Does that explain why we called 911? Or would you prefer that we lose our balance trying to protect him and fall through a window first? Or should we wait until our son is choking on a medication first? And if the behavioral is rooted in urinary retention causing pain, causing extreme sudden self-abuse that will go directly to a private part during a catheterization, please explain how you would prefer we handle this urinary medical emergency safely at home?

“Didn’t you say baths calm him down? Did you try and give him a bath at home to calm him down?” 
Response: Yes, baths and hot tub therapy are calming for our autistic son during a mild to moderate behavioral crisis. Indeed water therapy is an effective re-direction for many autistic people. However, it’s not always this simple.  When a behavioral crisis reaches a certain level of severity, as in our autistic son twisting, turning, punching himself and arching his back while around a slippery surface, this is a sure sign behavior is rooted in a medical issue causing pain and it’s now dangerous to try to get him in and out of a bath or hot tub with only a few people to help. You need at least 5 people in a situation like this. Families don’t always have five people on rapid response stand-by to help keep someone safe in times like this. I wish there were staff available to provide this, but these behavioral meltdowns can be unpredictable. We do the best we can. When we can’t do anymore, we have to call for outside help to keep everyone safe. We aren’t doctors. We can’t diagnose medical issues causing pain, causing increased behaviors. We try to figure it out at home, but we can’t draw blood here. There’s no lab. What do you want us to do? Must my son slip and fall and crack his skull open before we call? Is that when you want us to call for help? We want him home as fast as you do, doctor. So let’s get to the bottom of this. Let’s help him so we can calm the behavioral issues rooted in pain down and bring him back home and keep him safe. His behaviors are not always this severe. 

Increased severity and duration of self-abuse is always because he’s experiencing discomfort or pain. That’s why we’re here now. Why is this so hard to understand? It’s not about autism. Increased chronic self-abuse is sign my son is a person in pain. He needs medical help. Sedating my son all day with Ativan and Morphine, in the absence of further medical investigation is not proper medical treatment. 

The fact morphine is keeping him calm for short periods of time here at the hospital tells us that he’s in pain. The fact he’s waking up from a nap and presenting with facial grimacing and explosive self-abuse, is a sign he’s in pain. He doesn’t normally act like this. He’s way off baseline. We must find out where this pain is coming from in order to effectively treat it.

“Why didn't you bring him to his primary care doctor or psychiatrist or neurologist outpatient? Why would you call 911?” 

Response #1 when pain is causing off baseline behavior: The home care LVN called 911 because our son had a sudden onset of facial grimacing, followed by explosive self-abuse during a car ride to his autism day program. This sudden explosive behavior also entailed sobbing, punching himself in the ears and biting a piece of skin off his hand. He then twisted and turned in positions that no yoga master could accomplish, causing the seat belt to dig into his back and cause an abrasion, that further sent him over the edge, to the point the driver had to pull over and assist the LVN, who was struggling in the back seat, on the verge of tears himself, alone, trying to keep our son safe. All of this came out of nowhere, given our son was happy and calm before getting in the car. And normally loves car rides. What more do you want me to explain? I'm sorry if you don't understand non-verbal autistic patients. What does it take for you to understand that this is not his "normal" behavior? Moreover, one doesn't simply take an autistic person in crisis to a primary care doctor. You have to make an appointment to see outpatient doctors. Wait a few days. Or weeks. We’re in crisis right now. How can I better help you understand severe autism and extreme behavioral reactions to unknown pain? Not that I have time right now to educate you because my top priority is advocating for my son to get properly diagnosed by someone with a medical degree to figure out why he’s hurting. 

Response #2  when it involves seizures: We called 911 for seizures because the neurologist told us to when seizures won’t stop despite giving prescribed rescue medications at home or medications suddenly stop working and there’s a sudden increase in seizures. Any other questions? Yes, he has three types of seizures. His tonic clonics happen at night. Occasionally, in the day. Drop seizures can happen anytime, but are controlled now, so we’re just looking at increased tonic clonics. And he can have myoclonic seizures, too. No, we couldn’t just take him to the outpatient office of the neurologist. That would mean you have to call and make a neurology appointment that will be available in 3 weeks. He’s having seizures right now. No, we could not go to an urgent clinic for a continuous seizure, is this a joke? Are we on candid camera? I mean we would have to walk him to a car while he’s having seizure activity, risking him falling and getting hurt, put him in the car during seizure activity, risk bringing oxygen when his respirations drop and that’s dangerous in a moving vehicle, right? And if the seizures continue in the car, we’re looking at a prone person having a seizure in the back seat of a car, legs out, shaking, while someone is trying to drive. Yep, that’s why we called 911. To the best of my knowledge, uncontrolled seizures are a medical emergency, after all.

A new ER room that has never seen our son: "Hi, I'm here to talk to your son, James." Me: Who are you? Unknown woman with confused look on her face, "I'm from mental health. The doctor said your son was having mental health issues." Me: What???? Confused lady: "Well, can I ask James how he's feeling?" Me: Get out. Get out of our lives now. You have no clue. You don't even know he's non-verbal. And autistic. Leave. I'm done. I have zero time or tolerance for your ignorance. Confused lady: "I'm so sorry, I didn't know." Me: Yeah, everyone's sorry. Next time ask questions before you show up and cause us more stress and waste our time. Go. I just can't with this fragmented, low level thinking, thoughtless idiotic way you people deal with autistic patients in healthcare. Where's the doctor? We're here for a medical issue. You want information? Here, pass this along: your hospital needs to request funding to create a designated unit for patients with autism

“Have you looked into residential care? And treatment?” Response: Is that your solution to this immediate problem? Asking about residential care? Are you out of your mind? But since you appear to be so dangerously stupid, let me help you understand. Yes, we did. In fact, we did place him in an ICF-DDH years ago. The staff couldn’t keep him safe. They left him in his room, behind a closed door (while the one caregiver assigned to FIVE disabled teens, snoozed on a sofa in the living room) to punch himself so many times he suffered a hematoma to his ear, which is now permanently disfigured. Our son required emergency surgery to repair ear. While he was getting surgery, the group home administrator casually gave me a 30 day notice to bring him home, saying he “now needs 2:1 staffing.” That was 6 years ago. Since then, we’ve gone to several administrative law hearings to get the basic 24/7 1:1 help he requires to keep him safe at home and in the community. We’re still fighting for 2:1 staffing during behavioral and medical emergencies. And FYI residential care facilities that take autistic adults with behaviors aren’t staffed with nurses and the nursing facilities don’t have staff that know how to handle self-injurious behavior. California has a shortage of residential care homes to care for autistic adults with behavioral and medical issues. 

Many autistic people end up severely injured in these residential homes. We’re doing the best we can at home, with what we fight to get. We’re constantly advocating for better medical treatment and investigation and more support. Medical challenges include CT scan clues overlooked. For instance, the presence of Pneumoperitoneum could be sign of what is related to current increase in pain causing current increase in self-abuse. Why is so hard to connect the dots? As if all this wasn't enough, it's a constant challenge to get San Diego Regional Center to provide safe and capable home care nurses who can handle autistic consumers/patients. Residential care is non-existent. Everything is a battle. A battle to protect our son from his own self-abuse. Protect him from being abused by others. To advocate for his ever changing medical and behavioral needs, which can be intertwined. It’s exhausting, as if we’re not exhausted enough trying to maintain homeostasis in a medically and behaviorally fragile non-verbal autistic person, who, with sudden stomach, ear, nose or throat pain, will lose his mind in a savage self-injurious behavioral meltdown, all along, with every punch to the head is crying out, “Help me, please, please find where I am hurting.”

"Gosh it sounds so awful. I don't know how you do it." 
Response: We do it because we love our son. Autism is not awful. What's awful is dealing with other people's ignorance, apathy and benign neglect. Our son is often happy, healthy and living a productive meaningful life. He's a lot like a beautiful forest. When the forest is there, you look at it and say, wow, this is great. When it's on fire, you have to move quickly to stop the flames from spreading in order to preserve and protect the forest. You don't stand by the edge of the forest, twiddling your thumbs, taking soil samples, wondering where the wind will blow and watch it burn. 

October 27, 2015

Deceptive Practices of San Diego Regional Center

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                 Here’s a case where a Judge awarded my son 1:1 24/7 LVN, based on video evidence showing his intense medical needs. Before the hearing, San Diego Regional Center (SDRC) tried to get the video evidence tossed out. Thankfully, the Judge was able to see it. But I want you to look closely here. 

If you are of an investigative, analytical mind, or if you’re an attorney trying to figure out how the SDRC often operates, read what I’m going to show you to see if you can catch the deceptive practices by SDRC staff during this Office of Administrative Hearing (OAH) hearing.

To begin with: Present at Hearing was:

Ronald H, Attorney at Law, (SDRC in-house attorney that is strangely nominated by SDRC staff to "San Diego Magazine" as top attorney for Developmentally Disabled in San Diego County, even though House's sole purpose as an attorney for decades, is to fight against families advocating for their disabled children who need services.) represented the San Diego Regional Center (SDRC).  

I, Kim Oakley (just one mom against 25-30 SDRC staff and their attorney) represented my autistic son James G.

Here’s part of the case:  Remember the timing. The dates. The emails.

On November 7, 2014, OAH issued an order consolidating OAH Nos. 2014100467, 2014110273, and 2014100890. The parties agreed at the hearing that one decision would be written addressing all issues. The parties’ request to submit written closing arguments and keep the record open until December 23, 2014, was granted. However, the parties submitted additional arguments after 5:00 p.m., on December 23, 2014, which were not received by OAH until December 24, 2014. Those submissions were received in evidence and considered in this decision. SDRC’s objection to the new documents attached to claimant’s closing argument was overruled and those documents were considered. SDRC’s objection to communications occurring after the hearing was overruled as those documents demonstrate SDRC is working on placement, an issue in this proceeding. Claimant’s objection to SDRC’s rebuttal closing was also overruled and that argument was received. On December 24, 2014, the record was closed and the matter was submitted.”
During hearing, SDRC staff testified to the  Administrative Law Judge (ALJ) that they had a group home that could meet my son’s needs.

This was a strategy to justify denying more LVN home care needed. Yes, SDRC would testify it’s cheaper to place my son in an out of home placement. Specifically, the Program Manager told the ALJ that there were Deflection Homes that could meet my son’s needs.  Remember that. 

OAH hearing testimony: “Mr. Trammel, an SDRC Program Manager, “testified about Deflection Homes, a provider that could meet claimant’s needs and would be much more cost-effective for SDRC.”  Yes Sir Mr. Trammel, it sure is cost-effective when you place disabled people in homes that can't meet their needs and as such, it costs them their lives. 

The problem with this testimony is that not only is it illegal as per Lanterman Act to force someone in an out of home placement in lieu of providing home supports, but as per Ca. Title 22, Health and Safety Regulations, Deflection Homes aren’t licensed to care for regional center clients with certain "restricted" or "prohibited" medical needs.

My son’s medical needs are documented at SDRC. Specifically, that he needs administration of oxygen during seizures, IM injections to stop seizures, suppositories to relieve constipation, and as needed emergency urinary catheterization when he holds his urine for more than 12 hours.  

An example of a restricted need at Deflection Home is:

As per CA, Title 22, Div. 6., 87618, the law says a [Deflection Home] residential care facility can ONLY provide oxygen IF the “patient is physically capable of operating the equipment, is able to determine his/her need for oxygen and administer it him/herself.”  How would a non-verbal severely-autistic person having a grand mal seizure administer the oxygen themselves? Or determine if they needed it during a seizure? C’mon now! 

 SDRC staff knows this law. They have to: SDRC vendors dozens of residential care facilities for SDRC’s vulnerable developmentally disabled clients. Of course they know this law. But they told the Judge this home could meet my son’s needs. Shameless subterfuge.

Unfortunately, during the OAH hearing I wasn’t thinking at top form due to chronic sleep deprivation from not having enough nursing coverage for my son. Hence, I didn’t find or present the Ca. Title 22 Regs to the Judge. And of course SDRC didn’t. I was more focused on getting the 1:1 LVN care, not argue about the fact I knew SDRC was lying, because I had heard in past that Deflection Homes can’t handle severely autistic adults with seizures and other medical issues. That would’ve been “hearsay.” Not evidence. I didn’t know where to find the law. I’m not an attorney.

I did the best I could as an exhausted, frustrated mother trying to get her autistic son what he needed to protect his health and safety. And prevent these liars from advocating for a substandard group home that they knew was unequipped to meet his needs.


In an email dated 12/4/14, while the “record” was still open, and the SDRC charade was in full force, SDRC service coordinator Sarah S. advised me, the mother, to contact a Deflection group home that SDRC testified could meet my son’s needs.

Email from service coordinator Sarah S. on 12/4/14:

Mrs. Oakley,

There is a home in Fallbrook that is interested in meeting James.  Jaclyn's Home is a deflection home that is licensed for 4 clients, the opening is in a private room.  You need to contact the administrator of the home, Huber (310) ***-2135, to schedule a meeting.  Huber indicated that he was available to meet next week… 

Thanks, Sarah”

On 12/5/14, I contacted Huber. Then sent an email to the SDRC service coordinator.

Hi Sarah,

Just spoke to "Huber" at about 4:35pm....he says SDRC did NOT tell the home that Jamey needs suppositories or IM injections. Huber stated, "We are not allowed to do suppositories or injections here." He also said they do not have any LVNs on staff that would have to be "supplementary staff." 

I am surprised YOU, Sarah, did not discover this information, as you are the Service Coordinator, and I was under the impression you would be asking these very BASIC questions before you tell me there is a home that is wanting to meet us. That said, Huber made it very clear that this home could NOT meet Jamey's needs.

Any thoughts on this?

Kim Oakley”


This was the service coordinator’s thoughtful email response to me on 12/19/14: She completely IGNORES what I told her. 

“Mrs. Oakley,

Jaclyn's Home administrator, Huber, and owner, Flora Crow, have reviewed Jamey's referral packet and are interested in meeting with you and Jamey to further assess whether he would be a good match for the home.  Both Huber and Mrs. Crow are aware that the Regional Center is open to funding supplemental supports. I would like to coordinate a meeting; please call me to discuss date/time, location, etc.


Sarah, Social Work Counselor
San Diego Regional Center”
On 12/19/14, I emailed the service coordinator again and told Sarah I had tracked down and spoken with the “owner” of the Deflection Home, Flora Crow. Crow was honest with me about what she thought.

“Hi Sarah,

I received your phone message this morning, 12/19/14, at about 9:00 am, although I have asked you previously, to please email me. Again, please email as that is the preferred way I want to communicate with you. That said, your message said Jaclyn's home owner, Flora Crow, has been "reviewing referral information" on James. You further stated in your phone message that SDRC is "willing to fund any supplementary staff necessary to meet Jamey's needs." However, that is not the whole truth. Around 10:00 am, I was able to track down and speak with the owner of Jaclyn's home, Flora Crow.

When I spoke to Flora, she stated that she has reviewed the referral and saw Jamey requires medical care and that her deflection home is "non-medical." She further stated Jacklyn's home has "No LVNs" on staff, there is only a nurse who comes out one time per week, for a few hours, to check medications.

You, Sarah, did not tell Jaclyn's home if the supplementary staff would be LVNs, specifically the 1:1 LVN care Jamey needs round the clock to administer rescue IM injection seizure medications or per rectum Diastat rescue seizure meds, administer prescribed oxygen, PRN medication or administer Bisacodyl suppositories.

Instead, you told Flora SDRC would "consider" funding "extra hours" for the nurse who comes out ONE time per week to check medications. ONE TIME PER WEEK FOR A FEW HOURS.

When I reminded her that James can have a seizure at any time  of the day and night, and has to have his seizures promptly treated, as his right under the law, she again said the home only has a nurse who comes out ONE time per week for a few hours to review medications, this is not a nurse who would be assigned to James to meet his 1:1 LVN nursing need, or who would be an LVN present to PROMPTLY administer prescribed rescue IM or PR seizure medications or apply oxygen to James.

Flora also stated, "Our staff can't do IM injections of your son's seizure medication." When I asked well, how about administering the PR (per rectum) Diastat, she repeated again, "we are a non-medical facility" "we can't administer rectal rescue seizure medications" "we are not even allowed to do suppositories(bisacodyl)" and "we are not allowed to administer oxygen during seizures" Flora noted that administering these meds are only something an LVN or RN can do and if there is no LVN assigned to James at all times, they would not be able to administer his prescribed seizure medications or oxygen, as such he would be deprived of prompt medical care, which is unlawful and places his health and safety at risk.

Flora [Crow] further stated that even if SDRC would fund supplementary staffing, this would have to be in writing, very specific, and THEN she would have to go to the Department of Social Services and see if they would ALLOW such medical care needed for Jamey, inside the Deflection home , since her deflection home is ‘non-medical.’ When I asked how long getting an "exception" would take, she said she "didn't know" and "wasn't sure" if the Dept. of Social Services and Community care Licensing "would even grant an exception" for a person like "your son who has these medical needs." She said she never heard of one being made.

Why isn't Kathy K, the ‘nursing supervisor’ [at SDRC Clinical Services] asking [deflection home] these nursing issue questions? My guess is that Kathy already knows the answer to these questions and avoided telling ALJ so SDRC can stall for time. SDRC doesn't want the ALJ to discover the truth in the details and facts. SDRC wants to omit truth, which is why we end up at Fair Hearings. Why do you keep misleading my family and the ALJ? It's one thing to lie to us and keep us going in circles, but when you testify in front of the ALJ, she is relying on your testimony to make serious decisions about our son's life and care needs, so we can finally get some relief. You [and others at SDRC] are hindering the Fair Hearing process and [our family] seeking judicial relief-- by continuing to mislead the ALJ and our family. 

How dare you play games with my family and especially my son's life. *Kathy K. and others at SDRC who are in positions to know, knew damn well that a deflection home was NOT equipped to provide medical care, i.e... can NOT provide IM injections, administer oxygen or Bisacodyl suppositories for Jamey. And yet, amazingly, let the ALJ think a deflection home can meet his needs? When the owner of the home just confirmed an hour ago, they can't meet his needs? And aren't sure they ever will be able to. Well, there you go Sarah.
What do you have to say about this Sarah?

Do you have anything to say? Any other suggestions? 

If so, please let me know by email.

Thanks, Kim Oakley”


On January 30th, 2015, I received the following email from service coordinator:

“Mrs. Oakley,

Jaclyn's Home in Fallbrook has indicated that James is not an appropriate fit for their home at this time.

I will continue to explore placement options for James…
Thanks, Sarah”


To this date, 10/26/15, SDRC has still not found a group home that can meet our son’s needs. When we recently asked about group homes, they practiced deception again and another staff member said, “Oh, do you want us to look for out of home placement?” Here we go again. The merry-go-round of SDRC’s deceptive practices. One can only wonder what type of deception is brewing this year.


As you can see from the emails, SDRC has a crafty strategy when it comes to playing games with families, vendors and the Administrative Law Courts. It’s called the…let’s pretend we are doing case management strategy. We don’t know what the hell we’re doing half the time, even when we’re billing the federal government for case management, but who cares, because we know the disabled clients can’t fight us personally, and auditors only review records we let them see, so we’ll make believe we do something and hope the Judges, the auditors, the congressional committees and DDS buys it when we eventually write our self-serving reports and find compromised employees and stakeholders in bondage like us who will testify that they can swear by it, but who cares, this is a great place to work and hide and have all this money to play with. Nobody can stop us. We’ve got disabled people who can’t talk. They can’t fight back. They won’t come after us. So we’ll just try to keep those testy parents who fight us at bay. Damn these parents. Those ingrates! After all we do, the great and wonderful SDRC. Title 22 my ass. Who gives a rat? Just tell the ALJ we can find a home that can meet his needs. Find the first home that says they can meet with the mother…that should be enough to cover us until the matter is submitted. After that… send the mom an email that says the HOME now says they can’t meet his needs even though we already knew that. That way it will look like we had nothing to do with it all along. Gosh we are smart. No big deal. Is it Friday yet? Dang, I love my job. This is a super place to work.

Source on Title 22: 


Source on Jaclyn's Home, aka Nala's Res. Fac.SO: licensed by the Department of Social Services, San Diego County, but also found on San Diego Regional Center's "Service Provider List", under RES FAC ADULTS:SO, Vendor # H72766


*Keep in mind that Kathy K., the RN, and Sarah, the service coordinator, like many lower level SDRC employees, working under SDRC's narcissistic leadership, may want to do what is right, but are constantly pressured to agree with the collective narcissistic toxic leadership of this agency. In short, the Sarahs and Kathys of SDRC are the SCAPEGOATS, messengers or fall gals/guys for the toxic leaders who work through them as a means to achieve their goals, which is to mostly deny services to the disabled. And cover the butts. On the contrary, employees at SDRC who fondle the top narcissist's ego... with constant praise and admiration, become the "golden employees" of SDRC."  It's a case study in abnormal group dynamics and group psychology. 
Isn't that right Johnny boy Sca....