Remember in my last post when I mentioned that the California wind is full of bullies these days? When I made my observation I had no idea all that hot air was about to blow my direction.
Valerie* asked me to support her during a case conference last week. She is a single mother of 4 children. Her oldest is 7 and her youngest are 3 year old twins. One of them, Dean, has cerebral palsy. But this story is about her 5 year old daughter, Lana. It can be kind of unclear what is going on with Lana. Her hippocampus did not develop properly and she has brain damage. During the meeting she was diagnosed with global developmental delays, placing her more around the age of 3 1/2. She is very temperamental with high anxiety and language delays. She was receiving Cognitive Behavioral Therapy and it was helping. They previously tried two pharmaceuticals, Risperdal and Abilify, during the time she was misdiagnosed with a tic disorder. But after a disastrous 8 month trial, Valerie understandably began looking into alternatives and found pediatric cannabis. Within weeks of trying it, Lana began to demonstrate notable improvements with her moods and attention. And their vulnerable family began to experience what it is like to not have every day revolve around a Lana crisis.
So why the case conference? That’s what I kept asking. Despite the encouraging changes in Lana, the high profile, highly respected program where she received services had some concerns regarding this alternative. They were alarmed when Valerie brought it up, who communicated it with them thinking that was the responsible thing to do. They requested a meeting to figure out how this will impact the next two months of services. (When Lana enters school in the fall her treatment will transfer into the hands of the school district.) It was worth it to Valerie to try and work with them because both Lana and Dean receive services there.
This was the set up: the case manager, the psychologist, the CBT therapist, the psychiatrist, the medical director, the boyfriend, Valerie and me (via speaker phone). They laid out a very impressive and thorough assessment of Lana’s assorted symptoms and then discussed the option of treating her anxiety with pharmaceuticals. From there the ball started rolling. Primarily between the 2 medical doctors in the room and Valerie. Back and forth.
They pitched the common arguments against pediatric cannabis – not enough known about the 60 different cannabinoids, no long term research, you haven’t given pharmaceuticals enough of a try, it causes brain damage, its psychoactive, “I have 30 years experience”, “I wouldn’t do this to my child” . . . its way too risky.
And Valerie threw back the common arguments in favor of pediatric cannabis – I know enough to know its already helping, there isn’t long term research on children and pharmaceuticals either, I tried it your way and it was scary, pharmaceuticals can cause brain damage too, we are being safe and getting support, I would be open to anything helpful for my child . . . it doesn’t feel as risky as what you are offering.
How risk is interpreted highlights the ways our values can polarize. For some, placing a child on marijuana is more risky than placing them on an antipsychiotic. For others, it is less risky. Valerie’s position changed over time, based on personal experience. She tried it the doctor’s way first and Lana’s pharmaceutical experiment was scary. She didn’t just gain weight and begin to develop breast tissue. She would tell her mom she wanted to die. In those words. Medications made Valerie’s developmentally delayed little girl suicidal. In fairness, they were not the prescribing doctors, but they were definitely aware of their colleague’s prescription, supported it at the time and provided concurrent therapy.
So the meeting was at a stalemate. Nobody budged until they played it like this: they discharged Lana from her CBT and seriously THREATENED TO CALL CHILD PROTECTIVE SERVICES.
This was me:
Yes they went there. So. I’m very clear – I am not afraid of CPS. They are my friends and colleagues. Within 24 hours I’d already consulted with my people and was trying to calm Valerie down. Valerie didn’t sleep for weeks before the meeting. And the night after she cried herself to sleep and then fearfully sent her children to school the next day. Valerie isn’t a professional social worker. Valerie is a single mother to 4 kids, including 2 with highly special needs, who need her to be her best mommy. To Valerie, a threat like this to her struggling family feels very real and very terrifying.
Both of my CPS case worker friends reassured me this isn’t the case. We assume they are accusing Valerie of placing Lana at a “substantial risk” that will cause her to suffer “serious physical harm.” My friends easily acknowledged that this allegation would be hard to substantiate given that perceptions of risk are so “subjective” and steeped in personal values. CPS has more of a history of getting involved when parents are taking no steps to treat their children, as opposed to when they’ve chosen an alternative treatment. Those families I know who actually have had CPS sent their way had very short investigations – because there is no evidence of cannabis causing serious, physical harm. How the child is actually doing on the treatment is very relevant. There can be a “proof is in the pudding” sort of philosophy, so if the child is doing well on the alternative (and mom and dad are keeping their side of the street clean obviously), then there would be no case at all.
Its not as clear cut as “I don’t agree and I’m the doctor, so I win.” One friend at CPS was especially unimpressed by doctors with that attitude. She was the one to suggest intimidation because selecting an alternative treatment option against a doctor’s recommendation not to is clearly not a CPS case, particularly when they have no compelling case-specific evidence. And if there is no case, then why threaten CPS at all?
But by my observation, that was exactly the undertone to the meeting. And it caught me off guard because while they remained calm and friendly, they were clearly the authorities. I’ve actually never encountered that one before. For the most part everyone I’ve ever spoken to about this has been respectful, curious and encouraging. But this was beyond the opposite. It wasn’t just offensive, closed and discouraging. It was final. By the end there was intimidation and fear in the room. Valerie feels betrayed. It was hurtful and completely avoidable.
By this point, I agreed with the discharge part for sure. Valerie definitely needed to find more progressive and compassionate service providers. I questioned them about the purpose of the meeting, if this in fact was their intention all along, and they stated they didn’t know it would go this way.
But I suggest that of course they did. This was their meeting. They knew Valerie’s position – one of them had already literally shown her the door when she first brought it up. And they somehow decided that the risks involved with pediatric cannabis are so imminent that they should ALL get together to confront Valerie. And someone came up with the plan that if she disagreed it would be better to discharge Lana and possibly call CPS on a stressed out single mom than to join with her and continue to offer her developmentally delayed daughter services for just two more months. These top specialists in child development, mental health and family systems actually did decide that increasing fear and decreasing support made the most sense. They are that afraid of cannabis and there was apparently no other way to mitigate their concerns.
So in addition to everything else in her life, Valerie now gets to find new providers for her children. (It felt especially obtuse when they questioned why Valerie was also discharging Dean.) Her follow up question to me was, “Where are my children suppose to get services?” She now is concerned about cannabis being in Lana’s medical record. So I contacted my friend over at the Regional Center who said their position is to support families decisions as long as there is a medical provider following the child. I reached out online to families on Facebook to ask about their experiences with the Regional Center and not one said they had been threatened or had services discontinued because their child is on cannabis.
So, see? Unlike these bullies, there actually are professionals willing to provide services to our children and treat our families with respect and kindness. There are professionals who are happy enough for us when our children improve and are curious about how cannabis may be helping. Parents, of course, should expect nothing less. There certainly is no risk or reason for people to start throwing their weight around.
“I’m not here to convince you” were my starting and parting words to the above doctors. We don’t need you to agree with us. But we still deserve support. These two can coexist and I have a handful of concrete suggestions for those professionals questioning how:
• Consult with your colleagues who have pediatric cannabis patients and learn how they have been able to support us in spite of similar concerns.
• Use your professional development hours to educate yourself about what we are doing. Not so you can endorse us but so you can maybe learn to meet us somewhere in the middle so that children like Lana aren’t discriminated against and don’t have their other necessary services disrupted.
• Seek supervision when your personal feelings are compromising your professional boundaries. While I could probably assume that my son’s neurologist wouldn’t use cannabis either, I certainly have no idea because he has never said so. That would be inappropriate.
• Provide Trauma Informed Services. This type of service delivery is especially important when working with emotionally vulnerable families. Being trauma informed includes paying special attention to not re-traumatizing patients who are already living with a baseline level of daily trauma. Parents of children with special needs are under constant stress, in constant crisis. We need support. Its that simple. Even if there was just no way this group could work with Lana under such “risky” conditions, there certainly were a variety of other ways they could have compassionately and safely been discharged.
Nobody is up for extra bullshit in their lives. So I propose we all just take CPS off the table. The bottom line is we need to be able to respectfully agree to disagree so our children can still get services. Isn’t that just common sense?
* We debated if changing their names was necessary and opted to do so at this time.